As readers have undoubtedly noticed, the leading medical journals are starting to make more content free to non-subscribers. The cynical view -- i.e. the correct one -- is that they are hoping to mollify the critics cheaply; they still keep most of the good stuff behind the wall. Anyhow, I have to take what they'll give me so here's an essay in the new NEJM by Erin N. Marcus about illiteracy and health.
Actually she tends to conflate general illiteracy -- limited ability to read -- with health illiteracy, which may affect people who can read some kinds of materials but who have trouble with specialized medical concepts or vocabulary. As Marcus notes, according to a large scale study about 14% of U.S. adults lack even basic literacy skills. Obviously, they can't read medication labels or the informational brochures the doctor hands you.
In my own research, however, I have found that many people who are perfectly well able to read the Boston Herald or a Tom Clancy novel lack basic knowledge of biology and as a result can't communicate effectively with their physicians. Of course their doctors are utterly obvlivious to this problem.
For example, I have interviewd dozens of people with HIV. One woman, who was smart, articulate, and professionally employed, told me that she couldn't understand what "viral load" meant until somebody explained to her that it's "how many baby viruses the mother virus is having." Now she felt she understood it. Most of the people I interviewed didn't understand the concept of viral drug resistance -- they thought that it meant that their bodies would become resistant to the drugs. Out of 60 people who we interviewed for one study, exactly one understood that drug resistance resulted from Darwinian evolution, and could explain how it worked.
This information isn't just for fun, either -- it is absolutely critical for people living with HIV, so they can understand the importance of strict adherence to medication regimens and avoiding re-infection or re-transmission of the virus, even with partners who are already infected. As a matter of fact, I wonder whether all of my readers feel comfortable that they fully understand all of these concepts. Should I explain them here?
How many people understand the basic design of the eurkaryotic cell -- or even know that there is such a thing? How many people really comprehend what DNA is or why it is important? Without this knowledge, you can't understand cancer, for example. So let me add that to the poll -- are there readers out there who aren't completely sure they know what eukaryote means?
I find myself in a minority, but it really offends me that many health care providers and health educators try to jury rig a solution to this problem by talking to patients in metaphors. For example, one man told me that his doctor had told him to think of the virus as "enemy soldiers" and his meds as "our soldiers." We have to keep as many soldiers in the field as the enemy or the enemy will gain territory. Actually, military metaphors are very popular in medicine.
These metaphors are misleading and patronizing, as far as I'm concerned. People deserve to have access to scientifically accurate information. We need to work harder to get it to them. Anybody who can find his or her way to the doctor's office is capable of understanding basic ideas of biology, they've just never had them explained properly. And the place to begin, obviously, is by teaching biology in school, and that means teaching evolution. Evolution, in the era of drug resistant pathogens, is life and death to us all. Actually, it is our life. It's our essence. Denying children knowledge of evolution is child abuse.
Monday, July 31, 2006
As readers have undoubtedly noticed, the leading medical journals are starting to make more content free to non-subscribers. The cynical view -- i.e. the correct one -- is that they are hoping to mollify the critics cheaply; they still keep most of the good stuff behind the wall. Anyhow, I have to take what they'll give me so here's an essay in the new NEJM by Erin N. Marcus about illiteracy and health.
Sunday, July 30, 2006
A basic requirement for scientific belief is intersubjectivity. We need to all be able to look at the same evidence and agree on what we are seeing. While some people have looked at scientists as a kind of new priesthood, this is a highly imperfect analogy. Priests claim to have a private channel of communication with the truth. Scientists may depend on expertise that few people share, and some of them, who work for private industry or military agencies, may try to keep secrets, but ultimately, widespread acceptance of scientific belief depends on accessibility and public demonstration of its explanatory power.
Many people fervently support George W. Bush because he describes himself as a Christian and says that he is guided in his conduct of office by Christian belief. He goes further than that: he claims to take his orders directly from God. He told Palestinian President Mahmoud Abbas "God told me to strike at al Qaida and I struck them, and then he instructed me to strike at Saddam, which I did, and now I am determined to solve the problem in the Middle East." Unfortunately the original report is no longer available on-line, but he later told a group of Amish that "I trust God speaks through me. Without that, I couldn’t do my job."
The problem for me is that I don't have the opportunity to listen in on these conversations. Evidently God told Bush to oppose a cease fire in Lebanon, so that Israel would have the opportunity to continue creating a new Middle East. God's will is evident in this picture from Qana.
A man cries next to dead bodies after Israeli air strikes on the southern Lebanese village of Qana. At least 51 people have been killed, many of them children, in an Israeli air blitz on the Lebanese village of Qana, triggering outrage across the region and warnings of retribution for Israel's "war crime."(AFP/Nicolas Asfouri)
Now, quite possibly God is telling you something different. But why should I believe that either? I stopped listening a long time ago. So should everybody else.
Thursday, July 27, 2006
You know, having someone harm your child is one of the worst nightmares a parent could face. . . .Protecting our children is our solemn responsibility. It's what we must do. When a child's life or innocence is taken it is a terrible loss -- it's an act of unforgivable cruelty. Our society has a duty to protect our children from exploitation and danger.
George W. Bush, July 27, 2006.
A terrorist killed by an Israeli bomb in Lebanon.
Another dead terrorist.
More dead terrorists.
By JENNIFER LOVEN, Associated Press Writer
WASHINGTON July 27, 2006-
President Bush declined Thursday to criticize
Israel's tactics in its continuing offensive against Hezbollah guerrillas in southern Lebanon,
According to a report in Radiology Journal, discussed here by the BBC, increasing numbers of Americans are too fat to fit into imaging machines. Also, more and more people are so fat that they can't be scanned by ultrasound because the fat blocks the sound waves. So, they are likely to have cardiovascular disease, but the doctors can't image your coronary arteries to see where the blockages are.
You may also have read about a new report in JAMA (subscription only, natch, but here's the abstract) which found that people who acquire Type 2 diabetes as children had about 5 times the risk of end-stage renal disease as people who became diabetic as adults; and 3 times the death rate before age 55 as non-diabetic people. I would call this another open door crashed through, but sometimes it takes the hard facts to get people's attention.
The good news is that this study is one of a series of studies on diabetes that have been conducted among the Pima Indians of what is now Arizona, and that the Pima may be showing the way to preventing overweight and diabetes. The Pima, like Native Americans generally, are at high risk for Type 2 diabetes -- but only in the modern era. Their genetic heritage, forged in an environment of scarcity, is particularly unsuited to conditions in industrial society. In a pilot study with 95 Pima, many succeeded in adopting a traditional diet and lifestyle, and the intervention shows real promise. A larger study involving additional Indian tribes is now underway. Perhaps the real Americans can save some of us illegal immigrants from ourselves.
Wednesday, July 26, 2006
And really, really pissed off. I try to stick to subjects I know something about here -- unlike the vast majority of pundits and politicians. Well, I happen to know something about the Middle East. Without boring you with the details, I have a long history of involvement with activism around Middle East issues and in fact I once made my living in the field.
The people in control in this country are nuts, delusional, horribly dangerous. There are exactly two nations on earth opposing an immediate cease fire in Lebanon: the U.S. and Israel. The U.S. leadership apparently sincerely believes that it can get its way in the Middle East by means of force and violence, and that the violence going on right now is beneficial to its ends. Whether the Israelis also believe this, or are simply trapped in the logic of the situation they created,* is not clear. I won't try to analyze their thinking. I'm also not going to offer a superfluous analysis of the whole thing. I recommend Billmon and Juan Cole as obvious starting places.
What I will say is that it is very obvious that the elite classes in the U.S. -- and that includes most Democratic politicians, news analysts, and even investors -- have not grasped the danger of a wider war, and the terrible consequences. There are many ways in which the violence could expand -- not that it isn't bad enough as it is -- some of which have nothing directly to do with Israel or Hezbollah, all of which would reveal the grotesque and deranged position of the United States.
For example, Turkey might see this as an opportunity to deal with the PKK in Iraqi Kurdistan -- whereupon sovereign Iraq would be technically be at war with a NATO country, although in reality Kurdistan is already independent. The chattering classes also seem unaware that Nuri al-Maliki, the Prime Minister of Iraq, who depends for every breath he takes on the 4th Infantry Division based at Fort Hood, Texas, is head of the Dawa Party, which was instrumental in creating Hezbollah and Islamic Jihad. He spent much of his exile as Dawa bureau chief in Damascus, now a new, honorary member of the Axis of Evil, where he was no doubt intimately involved in the development of Hezbollah. And he's addressing Congress this morning as a symbol of our triumphant liberation of Iraq. This is insane.
*Yes, yes, Hezbollah kidnapped two soldiers. Israel then destroyed the Beirut airport, all of Lebanon's major highways and bridges, and blew up a couple of hundred children, among other actions taken in self-defense. They have had a plan to do this for years. They just needed a pretext. That is on the public record. And no, Hezbollah did not start launching rockets until after Israel started bombing, although you frequently hear the opposite in American news accounts.
Tuesday, July 25, 2006
We can't, and shouldn't, just say no to drugs. It makes a lot of sense to take some drugs, under some circumstances. Surgery without antibiotics, for example, would be a very bad idea. So would treating pneumonia with chicken soup. It is pretty clear that for people who have heart disease and have had coronary events, taking drugs such as statins and ACE inhibitors prolongs life, and it is at least a reasonable decision for people who have established risk factors for heart disease to take such drugs. And so forth.
However, it is often -- no, I'll say usually -- the case that sorting out whether it is in a particular person's interest to take a particular drug at a particular time is very difficult. It may well be a matter of judgment with no clear answer. It's often a bad idea, even a very bad idea, but it's easy for prescriber and patient not to know it. Here are some of the reasons.
First of all, drug trials are designed to show that drugs do good; they generally aren't designed to detect or establish harmful effects. There are at least four problems here, two of which are fundamental philosophical difficulties (FPDs).
- Since we can't generally predict in advance what harms might be caused by a drug, we don't even collect data on all possible adverse effects during a clinical trial. We couldn't if we wanted to, since the possibilities are unlimited. We will keep track of deaths and events of major clinical significance, but we can't measure every possible biological parameter that might be adverse, but doesn't produce immediately noticeable symptoms.
- Clinical trials used to establish safety and efficacy usually don't go on for very long -- seldom more than six months. It often takes longer than that for adverse effects to emerge.
- Here's an FPD: tests of statistical significance depend on specifying end points in advance. We want to prove that Rebleckafecklameckla* lowers blood pressure, and we note a difference between the treatment group and the control group which is too large to have arisen by chance. There are bound to be innumerable other differences between the two groups, just by coincidence, but we can't establish p values for them because if you make ten or more comparisons, you're likely to get at least one spurious association.
- Here's another. The study is sufficiently "powered" - i.e. has enough participants -- to detect the clinically important effect we're looking for. But there might be adverse effects which are relatively uncommon, which the study is too small to detect, but which are serious enough to outweight the benefits, even if they are rare. I.e., Vioxx relieves pain very reliably, but so do lots of drugs. It also occasionally kills you, which many of the alternatives are less likely to do, but the study was too small to prove that. (Actually it wasn't, but the drug company didn't want to interpret it that way. Which is another problem, I suppose.)
So, evidence of adverse effects typically emerges only after a drug is approved and used in thousands or millions of people. But then we aren't doing controlled studies of its effects. If we start to get reports that people taking Rebleckafecklameckla are developing excessive nose hair, is that really an effect of the drug or are people just attributing it to the drug because they happen to be taking it?
But it gets even more complicated. Drugs may be risky for some people but not others, depending on factors such as what other drugs you're already taking and any number of medical conditions. With 7,000 drugs the number of possible interactions is astronomical. Doctors can't possibly keep track of all the counterindications, cautions and interactions, and for patients to truly make informed choice about taking drugs is, quite frankly, a totally unrealistic goal. And, of course, what we know about adverse effects, counterindications and interactions continually changes, long after drugs and their "labels" (really novelette length essays written in highly technical language) are approved, while it can take years to update the labels.
And, of course, drugs can be very expensive.
So what's a person to do? I say, the best you can do is to be conservative about taking medications -- if not doing it seems like a reasonable choice, it's probably the right one. Ask questions. Read that damn package insert. Check out the info from Consumer Reports on the "best" drugs, or, for a more negative view, check out what Public Citizen has to say about the worst drugs. Of course, a lot of drugs get both ratings. Hmm.
Whatever you do, don't depend on the FDA to protect you. They aren't working for you.
*Obviously I made up the name but they are starting to run out of decent names for drugs, as you may have noticed from their increasing bizarreness.
Monday, July 24, 2006
I'm actually not talking about impending World War Last -- I think I'll have to get to that however. I'm talking about the usual subject, doctoring. After a weekend away from the beat, I wake to up to read:
According to a new report by the Institute of Medicine, issued under a Congressional mandate, 1.5 million Americans are harmed or killed by medication errors every year, costing $3.5 billion just in excess medical expenses to treat the injuries, who knows how much in damage to lives and lost income. As a matter of fact, it works out to 1 error per hospitalized person per day, plus innumerably more errors that happen in outpatient settings. In other words, when the nurse shows up with the little cup of pills, it's probably about an even bet whether the right stuff is in there. (As I said in an earlier post about health care quality, they can't even get it together to give an aspirin to somebody who comes in with a heart attack? What gives here?)
The ever more popular stomach reduction surgery results in substantial complications for 4 out of 10 patients within six months, according to the Agency for Healthcare Research and Quality. And I don't just mean a tummy ache -- we're talking infections, pneumonia, respiratory failure, and uhh, a minor thing like gastric juices leaking into the body cavity. Average cost per complication? More than $36,000. If you're readmitted to the hospital? $65,000. That'll buy a life-time membership in the gym, you bet, and a lifetime membership in Jenny Craig. Of course, that's if you don't die. Doctors who make their yacht payments from doing this kind of surgery defend it, and say they're getting better at it, if they do say so themselves, but they can't actually prove that.
The simple fact is, we can and should do whatever we can to assure that health care is provided safely, effectively, respectfully, and to whoever needs it, when they need it -- BUT -- slicing, dicing and dosing the incomprehensibly complex ecology that is the human body is just something we aren't very good at yet, and quite possibly never will be. We just have too many moving parts that interact with each other too critically, mostly in ways we don't even understand. A tiny little mistake, or a wrong understanding of what we're doing in the first place, and you ain't got no red corpuscles.
We get much more value by staying healthy in the first place, in ways we understand very well how to do. Obesity is the result of a genotype that evolved in people chasing antelopes and digging up roots on the African Savannah being transplanted into a toxic environment in which we can drown in calories while barely having to lift a finger. Result? You get fat.
Well here's another open door crashed through: Play is Good for Children, Study Says. Yup, somebody got a grant to prove this:
Concerned by flaws in previous studies, Andersen and his colleagues set out to examine the connection between children's physical activity and risk factors for heart disease and diabetes. The study looked at 1,732 9- and 15-year-olds from Denmark, Estonia, and Portugal. Physical activity was monitored for four consecutive days by strapping little machines to the youngsters' hips, which monitored accelerations in body movements.
Despite differences among the three countries where children were monitored, the benefits of physical activity were consistent. The more-active children had healthier numbers for blood pressure, cholesterol, and insulin. Because it measures activity objectively, without relying on questionnaires, Andersen's research may lead to a reconsideration of physical activity guidelines by countries and global health organizations.
``This is much stronger evidence than we've ever had before," said Nick Cavill, a research associate in the public health department at Oxford University, who wasn't involved in the study.
So turn off the TV and kick 'em out the front door. It beats the hell out of bariatric surgery.
Sunday, July 23, 2006
The Boston Globe Magazine this week has an article by Stacey Chase on the four remaining Shakers, who live in the last Shaker community in Sabbathday Lake, Maine.
The Shakers, formally the United Society of Believers in Christ's Second Appearing, happily adopted the nickname after it was used about them pejoratively. This is very characteristic of their philosophy, which is built on pacifism, community, simplicity and equality.
As it happens, the Shakers were very important in my life. I attended the Darrow School in New Lebanon, New York, which occupies part of what was at one time the largest Shaker community and the center of Shaker spiritual life. The Meetinghouse at Mount Lebanon was the first Shaker meetinghouse in America.
The second meetinghouse, shown here, is now the Darrow School library.
Although the last of the Shakers had departed Mt. Lebanon in 1947, their spirit was palpable in the buildings and the land when I was there. The school -- which is still one of the finest independent high schools in the United States -- made a serious effort to preserve the Shaker heritage in its educational model. Every Wednesday, instead of attending class, we participated in Hands to Work, named for the Shaker motto Hands to Work, Hearts to God. We maintained an apple orchard, and cidermaking operation; a flock of sheep; and made maple syrup. We cared for the historic buildings and grounds.
Ah yes, the grounds. The community is on a plateau well up the west side of Mt. Lebanon, with long views across woodland and farm country toward the Hudson River valley. The campus is surrounded by woodlands where the ancient Shaker waterworks and remains of abandoned pasture walls and outbuildings still speak of old ways of life. The Shaker workshops are now dormitories and classrooms, and new buildings, not very comfortable with the old style, serve as art center, science center, and dining hall. The chapel, however, which is actually in what used to be the Shaker tannery, resonates powerfully of lost time. It makes sense, actually, that the Shaker meetinghouse is now a library, and a Shaker workshop now a chapel, because to the Shakers, work was worship, while for a school, of course, learning is the central sacrament.
I still have dreams about the land, often with no people in the dreams, just the land telling me its story, which is partly a story about nature, and partly a story about people. It breaks my heart every day that I am not there. The Shakers were farmers and artisans, obviously not hunters and gatherers, but they respected the land and stayed close to it. They maintained much of their property as woodland, as do the Sabbathday Lake Shakers today, and their artisanry depended heavily on locally available materials, local markets, and low technology methods. They shaped nature to their needs, through extensive waterworks and land management, but in a manner that was efficient, and minimally disruptive. They left he smallest footprint they could. They eschewed luxury, pretension, and ambition. The esthetic that grew from their way of life has become iconic, and pieces of their bare, basic furniture are now worth tens of thousands of dollars to people whose philosophy and way of life is approximately the opposite of the Shakers'.
They lived sustainably. Except for one small problem. They were celibate. The Shakers were probably the first substantial group of European origin to practice strict equality of the sexes. They abandoned individualism, marriage, even family, for a greater ideal of community. But alas, they could not reproduce. Their communities grew at a time when there was no social safety net and no state-sponsored orphanages or foster care system. They operated an orphanage at Mt. Lebanon, and man of their charges elected to remain upon reaching adulthood. Other lost souls or economically displaced people joined them, along with spiritual seekers. But in the modern era, there is no longer the same need for the sort of sanctuary they offer, and celibacy is just too high a price for very many people to pay, even those who are drawn to them for the sake of equality, peace, and community.
So that's one great question that remains from the Shaker experiment. Can we have utopia, and still have sex? Or do the explosive forces of sexual passion, jealousy, and possesion, along with the iron bonds and unforgiving hatreds of family, bar us forever from the garden?
Friday, July 21, 2006
Okay, so here we are in strip mall hell in Rockville. Everybody has given a preliminary score to each of his or her assigned proposals, ranging from 1.0 (eeeeeeexcellllent) to 5.0 (hey, this is a family blog, at least for today). You can also just say "not recommended" or "unscored," which is equivalent in effect to a 5.
Actually, anything 3 or below is already pretty much the kiss of death. Proposals that don't have at least two scores better than 2 (i.e., lower) go on the dumpster list. The reviewers, sitting around a table in a hotel meeting room, glimpsing each other over the tops of their laptop computer screens, each say a dismissive sentence or two about them, then the group votes to mark them as "unscored." The rest of the panel has generally speaking not even glanced at them. The applicants do get to read the reviewers' comments.
Then there may be a proposal or two that has a single defender. Those will get some discussion among the reviewers, with panelists free to ask questions or add their own comments. At this point other panelists may pull up the proposal on their laptops and try to skim to the good parts in the 5 minutes or so allotted for discussion. The defender probably won't change any minds, but if he stubbornly sticks to a score above 2, the other two reviewers will be asked to announce their scores -- presumably a zinger like a 4 or a 5. Then the rest of the panelists will have to enter theirs -- based on whatever they have been able to grasp of the substance, along with grooming, body mass index, and resonance of voice of the disputants.
The remaining 90% of the meeting is taken up with proposals that got reasonably good average scores from their assigned reviewers. There is a somewhat lengthier discussion of these and the non-reviewer panelists make a little bit more of an effort to read the abstracts and skim the narratives while the reviewers are talking. Unless there are especially profound issues, these might get 10 or 15 minutes of discussion. Then the reviewers announce their final scores, and everybody else writes down theirs. The non-reviewer panelists are expected to mostly stay within the range established by the reviewers; basically they will go right in the middle if they really don't have an opinion, or tweak it up or down if there is some specific issue involved that is particularly important to them. If they want to go outside the range, they may later send an e-mail to the NIH staffperson in charge for inclusion as a minority report.
Finally, a record of the whole procedure goes to a National Advisory Committee, which actually makes the funding awards. The scores are averaged and then multiplied by 100 to eliminate the decimal point, so they can range from 100 (in principle but never in reality) to somewhere in the 200s. (Anything higher than that would have been unscored.) The Institutes will generally pay off somewhere around 180, but may go slightly above or below that depending on the financial circumstances.
1) The reviewers are practicing scientists who presumably have appropriate expertise to assess plans to conduct scientific research.
2) The reviewers don't work for NIH and aren't subject to any obvious pressures from the funders; what they say about these proposals probably doesn't have any relationship to their prospects for getting their own proposals funded.
3) At least you have three people read each proposal so if two of them miss a fatal flaw, one may still spot it.
4) The reviewers are volunteers, more or less, so your tax dollars don't enrich them. (It does cost you, or rather the future generations on whose behalf we are borrowing the money from the Chinese, to fly them all to DC, put them up in a semi-cheap hotel, and pay them a reasonably generous per diem.)
1) Unlike the traitorous, French wine slurping mainstream media, the process has a conservative bias, in a many ways, three of which I will present as bullet points under this one just because I feel like it:
- The reviewers are representative of the existing community of well-established scientists. There are very few African Americans or Latinos represented, or people who really understand the circumstances and needs of underserved and disadvantaged communities. This doesn't obviously matter for hard core biomedical research, but it matters a lot for proposals with a social or behavioral science component. (I'll try to discuss this more fully in a later post.)
- Among the criteria reviewers are asked to consider, which some weight heavily, are the credentials and publication record of the applicants, particularly the so-called Principal Investigator. It's very hard to break into the in-crowd, even if your proposal is better than one of theirs. You're expected -- nay, commanded -- to go through the conventional "mentoring" route, as a slave-wage post-doc, before you get a bite at the apple. And so . . .
- Like unknown or unconventionally resuméd investigators, unconventional ideas don't have much of a chance. Viz Stanley Prusiner and his prions, or Judah Folkman and his angiogenesis. See item 2 . . .
2) There are mechanisms for exploratory and developmental research that are supposed to be one route for getting a start on studying novel or unconventional ideas. However, in my experience, few reviewers really read them in that spirit. They're in the habit of wanting science to work with quantitative hypotheses, to be tested by experimentation and p values. They just can't grasp the idea of visiting new territory and seeing what's there.
3) The elitist bias is particularly powerful. Although various institutes have, in recent years, issued announcements asking for community based participatory research, in which people in affected communities participate in the research process, there isn't one reviewer in 10, as far as I can tell, who understands what that means. In order to get funding, you have to write a completely conventional proposal in which every step in the investigational process, and in particular, the research questions, stated as hypotheses; data sources and measures; and analytic plan, are completely specified in advance. Some sort of interaction with the community has to be stuck on there as an appendage, but actually giving them any power will get you unscored. (Again, I need to discuss this more fully in a separate post.)
4) It all happens entirely in secret. There are good things and bad things about that. Reviewers are protected from revenge, or bribery, of course, so perhaps it's necessary. And applicants are protected from embarassment. But you are paying for it, and you have no access to the proposals, or the comments. (You can find out about the proposals which are funded. Also, reviewers can get away with trashing the potential competition -- which I'm sure happens all the time -- or boosting their friends. They're supposed to recuse themselves when they have a conflict of interest, but that is completely on the honor system and it's defined in a way which is simultaneously narrow, and vague.
So there you have it. The good, the bad, and the ugly. I actually don't have any really compelling ideas for improvement, off hand. I think they might think about restoring mechanisms specifically to support new investigators, and have mechanisms to support work outside of the conventional setting in the university, i.e. more funding that aims at building partnerships between academic investigators and community based organizations. There's a little bit of that, but again, very few reviewers can get outside of the box enough to read them fairly. And maybe they should set up a mad money fund -- a way to support exploration of those nutty ideas like prions that the smart kids all know are bullshit.
Perhaps we have a reader or two who has a stake in this process, or some familiarity with it. Any comments?
Thursday, July 20, 2006
Before I get to more of that brown shoe insurance stuff, I was meaning to write about the National Institutes of Health (NIH) peer review process. Assuming the U.S. still has enough resources 10 years from now to continue to fund health-related research, this does matter. This post will consist of exposition -- not the most exciting part of the movie. After a brief intermission, we'll start moving the plot.
There is a fairly bewildering tangle of institutes and funding mechanisms, which are served by a wide variety of review panels. Some panels only meet once, to consider one-time invitations for proposals called Requests for Applications. Other standing panels meet at intervals to consider proposals in one or another general field. Most of these are not associated with a single institute, but consider proposals directed at various institutes. Program Announcements, which are open invitations for proposals that may persist for 3 years or more, with quarterly deadlines, and some RFAs, may be issued by multiple institutes or single institutes.
Then, for RFAs and PAs alike, there are multiple funding mechanisms. For example, the R03 mechanism funds small scale, preliminary studies. The R21 mechanism is for slightly larger scale "exploratory and developmental" studies intended to lead directly to the big enchilada, the R01, which is funding for a large-scale research project of $500,000 a year or more and up to 5 years. There are mechanisms to fund research programs consisting of three or more linked studies with shared infrastructure; research center grants that focus even more on infrastructure development; grants for mentoring and professional development of investigators; and others.
All of these may be written in such a way as to shape the broad directions of research, with general shaping by Congress and more specific shaping by NIH staff, but for so-called extramural research - paid for by NIH but done independently - the applicants develop the specific research aims, questions or hypotheses, and study designs. Then they get a score from the peer review panel.
Typically, in one meeting, a panel may review some 40 proposals. Three panel members will be assigned as reviewers of each proposal, and each member will get about six proposals to review. If you do the math you'll see that there are about 20 members on a panel. All the panelists have access to all of the proposals, although only the assigned reviewers have access to the appendices, such as previously published research by the investigators, draft questionnaires, detailed protocols, etc., that may go with them. However, panelists are not required, or even particularly encouraged, to read proposals not assigned to them ahead of the meeting.
So, the assigned reviewers, ahead of the meeting, write critiques of their proposals. There used to be a lot of mail that flew around the country prior to the meeting, but now they post their essays on a special Internet site where the reviewers assigned to a given proposal can read each other's critiques. A federal travel agency gets everybody a flight and a hotel room, most likely in a strip mall wasteland in the Washington, D.C. suburbs, and the action begins.
[Curtain on Act One]
Wednesday, July 19, 2006
The issues I started this blog to discuss, the ones I usually write about, the stuff I like to think I particularly know something about, ought to be among the most important issues facing Americans these days. How we can stay healthy, get healthier, live full and good lives, take care of everybody who needs taking care of, conquer injustice and inequality -- that's what public health is about. This is the wealthiest society ever, we all should benefit from that, and have plenty left over to do our part for the rest of the world too.
But right now, the work I do and the problems I like to write about just aren't all that important. We're facing some very scary crises -- a bunch of them at once -- with the most depraved and incompetent leadership the United States has ever had, and our important civic institutions -- the news media, the political parties -- prostituted, cowardly and inept.
If I've been off my game lately with this blog, that's why. I think I'm not the only one, as a matter of fact. I have a long list of subjects I want to write about -- the future of employer-provided health insurance (not looking good); progress in understanding the relationships between social and economic status and health; continuing my critical review of psychopharmacology; the historical context of the U.S. health care non-system and possible ways forward; yet more on public health ethics; the promise and perils of electronic health records; how to make the physical environment safe, how to structure the physical and social environment to encourage healthy behavior -- there's a serious backlog.
But it just doesn't seem important. The obsession of the ruling cabal with force and violence; their wilfull blindness to every fact that doesn't suit their narcissistic delusions or might inconvenience their thuggish, greedy friends; their disdain for democracy and for the people, have sent the country on a path to ruin and placed the entire world in grave peril.
So, I've put that on the record. I've said what had to be said. Now I will get back to business, with that boring subject of insurance next on the agenda.
Tuesday, July 18, 2006
And we'll go ours?
The trend here in the US of A, of course, is to make people bear an increasing share of the cost for their health care, through higher copayments and deductibles. This is supposed to "empower" us by giving us "consumer directed health care."
It turns out that there has been a schedule of copayments for subjects of HRH Elizabeth II, by the Grace of God Queen, for 50 years -- who, unlike us, all benefit from the same health plan, the National Health Service. (Sort of like a universal, staff model HMO in our terms.) But now a parliamentary commission has taken a close look and decided that, on the whole, these co-pays do more harm than good.
International research has shown that health charges have a negative effect on health, and that patients with long-term illnesses suffer particularly when charges are in place. There is also some survey-based and anecdotal evidence which suggests that patients are less likely to visit their dentist or have prescriptions dispensed in full because of the costs.
The review should also consider a system of charges appropriate for future challenges. In the future, the NHS may not be able to pay for every possible medical treatment in a country with an ageing population, demographic pressures, rising public expectations and increased possibilities of medical treatment and long-term therapies. Some treatments or procedures may have to be charged for. The Government should consider this possibility sooner rather than later to ensure that a set of consistent criteria apply to those areas for which a fee is charged, to avoid the development of charges in an ad hoc way, as has been the case until now. With the introduction of such a system, it may be possible to abolish health charges which currently have a negative effect on health outcomes. The key principles that should be considered in this review are:
• services that are clinically necessary should be free;
• fees should not deter patients visiting their doctor or accessing healthcare; and
• any system chosen should be adaptable (to changing medical practice, treatments etc) and consistent.
Bottom line? They are proposing to go in exactly the opposite direction from the colonies, by abolishing most copays for ordinary, routine and preventive care; while considering (gasp!) rationing of expensive services that offer comparatively little benefit in relation to cost.
We aren't even having that latter discussion, even though the rising cost of Medicare is going to cause major fiscal problems in just a few years. How come Europeans are smart and we're stupid?
Monday, July 17, 2006
Well, this had to happen eventually. That tulip-infested land beyond (and below) the sea may be the first. A report done for the Netherlands government concludes that the public health insurance system should no longer cover treatments that cost more than 80,000 Euros (about $105,000) per Quality Adjusted Life Year. (If you are up on your Dutch, you can read it at www.rvz.net, as the publication entitled Zinnige end duurzaame zorg. Since my Dutch is a little rusty, I'm getting my summary from Tony Sheldon in the new BMJ.)
Here's the straight dope, folks. Resources are not infinite. You can always spend more and get a slight chance of a few more weeks of survival. In fact, that's all that most of the latest breakthrough cancer treatments offer -- the ones that merit screaming headlines in your daily papers. They extend life by three or four months, at the cost of tens of thousands of dollars. If we don't want health care to consume the entire economy, we have to figure out how to draw the line. Right now, it's done by social class and privilege, happenstance, media feeding frenzies, custom and habit. The report from the Dutch Council for Public Health and Health Care lays it down: 80,000 Euros for another year of tilting at windmills.
Where to they get that number from? I dunno. What it really ought to be is a political question, and I can't imagine we'll ever successfully get through that debate, here in the land of deepest denial and infinite entitlement. But that number, whatever it is, needs to be pulled out of its hiding hole and exposed to the light. Right now it's about 50 cents for a poor kid in Africa, and half a million dollars for a well insured American. That ain't right.
Now that the embryonic stem cell thing is back in play, we're hearing the usual, tiresome arguments between the pro-life and the pro-choice people. For some reason, as with many important public controversies, the officially acceptable discourse has an obvious hole in the middle, the real issue that for some reason rarely gets mentioned.
What I have to say about this isn't original (what is?) but it's what this is really all about. What is this thing called human life that we value? Curiously, the Catholic Church and right-wing protestants define human life, which they call sacred and infinitely precious, in a very unspiritual way. In fact, their definition could not even have existed during biblical times or for 95% of the history of Christianity, because it depends on scientific knowledge that we only acquired in the 20th Century. They define human life in terms of biological functioning and human DNA. Therefore a single cell -- a zygote -- is a human being, with precisely the same value and the same moral claim on the rest of us as a five year old child, or Jessica Simpson (whoever that is). And so, of course, is a being which possesses most of a human body but lacks a functioning cerebral cortex, the organ which is essential to awareness and moral agency.
This definition would seem to make sense only to someone who is profoundly autistic. It most certainly is not derived from the Bible, or from Judeo-Christian teachings prior to very modern times. It seems to me that the value of life derives from the capacity for empathy, that is comprehending and being moved by the feelings, desires, and moral choices of others. Hence the moral status of human life derives from the moral agency of human beings -- sentience, and the capacity for moral choice. As Peter Singer very controverisially maintains, on that basis intelligent animals such as dogs, chimpanzees and dolphins have greater moral status than a human embryo or a person with a badly damaged or undeveloped brain.
This seems obvious to me. A blastocyst is not a person. If it happens to be in the process of implanting in the uterus of a woman who wants a baby, then it is valuable to her because of its potential to become human. If it is in any other circumstance, it is valuable only insofar as we have some use for it.
I would love to hear some politician or pundit stand up and actually say this. The controversy is not between people who defend "life" and people who are for the "choice" to destroy human life. It's obvious who's right and who's wrong in that controversy. The controversy is between people who understand what life is, and why we cherish it, and people who don't. And that's how it must be framed if we are ever to move past this.
Sunday, July 16, 2006
Michael Shermer writes the "Skeptic" colum in Scientific American, in which he debunks pseudo-science, superstition, and religious mythology and champions the cause of reason - or at least that's what he thinks he's doing. In the current edition (that's the August edition, published, in magazine reality, in July) he writes:
Folk astronomy . . . told us that the world is flat . . . . Folk biology intuited an elán vital flowing through all living things . . . . Folk psychology compelled us to search for a humonculous in the brain . . . . Folk economics caused us to disdain excessive wealth, label usury a sin, and mistrust the invisible and of the market.
Shermer needs to turn his skepticism on his own religion, the pseudo-science of economics. I mistrust the mythological "invisible hand" of the non-existent "free market" not because I am mired in folk beliefs, but because I have a doctorate in social policy and I have spent my career since I earned it studying disparities in health. The argument that the "free market" somehow achieves efficient allocation of resources is based on a number of assumptions which do not happen to correspond to reality. As I have frequently discussed, these include the myths of perfect information, zero transaction costs, perfect substitution with many buyers and many sellers, zero externalities, willing sellers and willing buyers, and so forth. Most important, the mythological Free Market depends on there being no such thing as public goods: no air, no rivers or lakes, no oceans, no natural resources of any kind; no need for shared social infrastructure such as civic order, public safety, roads and bridges, educated and healthy workers. Finally, not even the most zealous defenders of the myth have ever come up with any cogent argument that even suggests a possibility that the Free Market, could it ever exist, would produce justice.
I used to admire Michael Shermer's work. I thought he truly was a skeptic and a realist. Turns out he's just a true believer, like the people who gather on hilltops to await the coming of the UFOs, or the Christians who are today rapturous over the war in the Middle East because it means the End Times are coming. Sorry Shermer, you have lost me.
Note: Readers of Today in Iraq are interested in developments in the Levant, but we just can't add any more weight to TiI. Whisker has sent the following links on the Lebanon-Israel-Palestine war, which for today only I am posting here for lack of an alternative.
1: Lebanese guerillas fired a relentless barrage of rockets into the northern Israeli city of Haifa on Sunday, killing eight people at a train station and wounding seven others in a dramatic escalation of a five-day-old conflict that has shattered Mideast peace. At least 20 rockets slammed into Haifa on Sunday, and one of them hit a section of the train depot where crews perform maintenance on the trains, tearing a huge hole in the roof and killing eight people. One body was covered in a white bag and placed on a stretcher on the ground.
#2: Soon after the Haifa attack, Israeli warplanes hit the south Beirut stronghold of Hezbollah with at least six airstrikes, shaking the Lebanese capital and sending a cloud of thick smoke rising over the neighborhood. The airstrikes in Beirut reduced an entire apartment building to rubble and knocked out electricity in swaths of the capital. Hezbollah's Al-Manar television station briefly went off the air
#3: Israeli troops, tanks and helicopter gunships re-entered northern Gaza on Sunday, firing missiles and exchanging gunfire with armed Palestinians in a raid that killed three militants.
#4: Hezbollah guerillas said they hit Haifa, Israel's third-largest city, with Raad-2 and Raad-3 missiles. The attack came after Israeli warplanes bombed a major power station south of Beirut and other targets in Lebanon. But it was certain to invite a far harsher Israeli retaliation.
#5: Rockets fired by Lebanese militants also hit Acco, Nahariya and several other northern towns, and residents of the region were told to head to bomb shelters. Israeli rescue teams said 20 people were injured in Haifa and Acco, four of them seriously.
Hours later, Hizbullah launched a new onslaught of rockets at Haifa and other communities across northern Israel, causing more injuries, authorities said. Rockets hit Kiryat Motzkim and Kiryat Haim, north of Haifa, and the northern towns of Acco and Nahariya. Area residents were told to head to bomb shelters.
#6: The IDF identified the bodies of three of the sailors who were killed Friday when their ship, the Hanit was hit by an Iranian-made missile fired by Hizbullah operatives. The three sailors' names were released for publication Saturday. They are: L.-Rtg. Shai Atias, 19, from Rishon Lezion; Fourth Petty Officer Yaniv Hershkovitz, 21, from Haifa; and First Petty Officer Dov Shtierenshos, 37, from Karmiel. Third Petty Officer Tal Amgar, 21, from Ashdod, whose body was recovered earlier, will be laid rest at 4 p.m. in his hometown.
#7: Hizbullah General-Secretary Hasan Na'srallah survived Israel's heavy bombing on the southern suburb of Beirut, a senior Hizbullah source told Al-Jazeera TV network. The source denied a report by Israel's Channel 2 early Sunday morning according to which Na'srallah was wounded during the aerial attack.
#8: Director General of Syrian Ports Brigadier Mohsen Hassan ruled out Sunday that the missile that targeted "Noor Light" ship, manned by 12 Egyptian sailors, had been launched from Lebanon. Speaking to Syrian Television, he said that the ship -- which had been 80 kilometers off the Lebanese shores and flying the Cambodian flag -- was more likely to have been hit by a missile launched from one of the Israeli warships or planes that were besieging Israel. He added that what indicated this attack took place with the knowledge of the Israeli marine forces was that it was they who contacted the ship that rescued the sailors. Israel had denied it had launched its missiles at the ship, and accused Hezbollah of having staged the attack.
#9: About 18 powerful explosions rocked southern Beirut _where Hizbullah is headquartered — for more than two hours after midnight Sunday. A day earlier, the Israeli air force hit Hizbullah strongholds, bombed central Beirut for the first time, and pounded seaports and a key bridge.
#10: The death toll in the four-day-old conflict rose above 100 in Lebanon, and stood at 24 in Israel. Hizbullah denied Israeli media reports that its leader, Sayyed Hassan Nasrallah, was hurt in an air strike Sunday, Al-Jazeera TV network said.
Post by Whisker
Friday, July 14, 2006
On this dangerous day. Only this. History shows that human societies are likely to develop cults of personality, that we seem to have a need to build our loyalties around individuals, more so, perhaps, than institutions and ideas. The essential genius of the U.S. constitution was supposed to be the rejection of personality as the focus of state power, and for a long time we largely lived by that post-Enlightenment ideal.
Why, here at the turn of the century, a time which is indeed a hinge of history, a large portion of the American people should have built a cult around the ridiculous, repulsive figure of George W. Bush has always been incomprehensible to me. That this wilfully ignorant, inarticulate, immature fool somehow embodied a force of history that was going to remake the planet in a Pax Christiana was the most delusional notion since the cargo cults. Yet it swept away not only the religious true believers who are by definition susceptible to such magical thinking, but most of the secular elites in the United States.
As the hallucinatory edifice started to collapse, they began by blaming those of us who had called it what it was in the first place. Now that they are standing in the midst of the wreckage, they seem simply stunned, unable to process the past or comprehend where they are. As the wreckage starts to burn, what will they tell us we are supposed to think?
I'm still too busy to do anything but blow smoke, probably until Sunday. It's been an interesting couple of days, for me personally. (The world has largely been shut out, actually, but I try to keep up as best I can.) I expect to have a lot to say later.
Thursday, July 13, 2006
I am not in the middle of a strip mall wasteland in Rockville, MD. It was a struggle, but I managed to get Internet access, and in the 5 minutes remaining to me before my meeting starts, I'll comment quickly on the approval of Atripla, a 3-drug antiretroviral combination pill, for HIV.
This is certainly a helpful development. The drug regimens that most people with HIV take are hard to follow. They involve at least two pills, that have to be taken two or three times a day, and if you miss even 10% of doses -- just a couple of times a week, in other words -- you risk giving the virus the opportunity to reproduce and evolve resistance to the drugs. Then you have a problem -- you need to switch to a different drug regimen, and if that keeps happening, eventually you'll run out of options. The world has a problem too, because if you pass on your drug resistant strain of HIV to somebody else, that person won't be able to use that particular drug regimen in the first place.
Atripla is one-a-day, which makes it likely that more people will be able to use it successfully. But don't break out the champagne just yet. These drugs still have side effects, which in many cases are quite serious. The protease inhibitor component, in particular, can cause metabolic syndrome and bizarre redistribution of body fat, among other problems. Eventually, many people will still experience failure even on this easy to follow regimen -- we'll see how long it takes, on average, but it will happen. And, the stuff is expensive. $1,100 a month, to be exact. Merck has suggested that it will offer a discount in poor countries, but it would have to be one helluva discount to matter very much in the hardest hit countries, where a dollar a day is a fortune.
A side effect of every advance in HIV treatment is that people end up thinking the HIV epidemic is solved. Realistically, this doesn't make a big difference at all. We're still fighting the same fight.
Wednesday, July 12, 2006
Tuesday, July 11, 2006
An essential difference between the perspectives of public health and medicine lies in their ethical foundations. Although broader considerations have begun to infiltrate medical ethics, physicians generally understand that they have an absolute obligation to the individual patient. That is what most of us want from our own doctors, and it is how most people believe doctors ought to behave. When an individual in desperate straits lies before us, we (most of us, anyway) instinctively want to strain every sinew, spend every penny, bend or break every rule, to save them.
This is called the Rule of Rescue, which I have discussed before and yet again. (And a few more times after that.) But public health addresses human welfare at the level of the population, not the individual, and here a conflict inevitably arises.
How much is a human life worth? Most people immediately respond, without even thinking about, that every human life is infinitely precious and it is offensive to put a dollar value on human life. But that answer is feckless. In the first place, we do not have infinite resources. And obviously, we do not spend even a small fraction of the resources we do have to extend the lives of people we could easily save, including four thousand or more young children who die every day from readily preventable causes such as contaminated water, malaria, hunger or violence. Indeed, the U.S. government expends vastly more resources to kill people than it does to save the lives of those children, while some of the very people who insist on the sanctity of all human life, including lives (or even what may be non-living entities) that many people don't even define as human, are among those who cheer the loudest.
And yet, responding to the rule of rescue, we expend hundreds of thousands of dollars to extend the lives of very sick people, even when they are very old, and most people consider it outrageous and immoral even to question this -- even when you point out that most people on earth don't have the benefit of these expensive technologies.
In public health, we know better. We know we have to try to develop some metrics for comparing the value of lives with the cost of resources, and we need to develop ethical principles for allocating resources in relation to lives. We also know that it is impossible to save anyone's life, because everybody dies -- and that starts early. At least a third of human embryos are spontaneously aborted. God is by far the most prolific abortionist and mass murderer -- no human being can ever come close. Human life may be precious to somebody or something, but it isn't worth shit to God.
In fact, if you take the trouble to ask people, it turns out they don't even think their own lives are infinitely precious. One metric that is often used in public health is the Quality Adjusted Life Year (QALY). You calculate that by first doing a large-scale survey and asking people how much life span they would give up to avoid a year of being, for example, totally bedridden, or wracked with arthritis pain. It turns out that nearly ever one is willing to trade some total time spent living to avoid some time spent living in unpleasant circumstances. (Most of us, obviously, don't even want to persist for one minute in a vegetative state, without hope of recovery. What would be the point?) You can take the average of responses to these sorts of questions to calculate the payoff for medical or public health interventions, including those that don't necessarily extend life, but promote health and prevent disability and pain. As a matter of fact, most people would even accept a large sum of money today in exchange for some weeks or months lost at the end of life. So you can put a monetary value on life after all. Some people even risk their lives intentionally just for a thrill, and we take a chance of dying every time we drive to the grocery store -- a chance which we are aware exists, even if we haven't consciously calculated it.
When we sit down and think about how best to allocate resources in order to maximize the values that people associate with human life, we inevitably end up with a rule of justice, not a rule of rescue. We get by far the biggest bang by concentrating on the least fortunate -- although admittedly only if we start after the fetus is well on its way, and by placing the terminally unconscious outside of our universe. Taking care of basic needs of poor children -- and the poorer the better, in terms of results -- and their families, offers by far the biggest payoff. And reducing social inequality in the first place has a double effect. Even without directly addressing health risks and health care needs, it improves the overall level of population health.
Next it makes sense to tackle pervasive health risks, which are often distributed inequitably but aren't specifically tied to poverty. These include tobacco, environmental contamination, violence, and other human-caused hazards. Why do these persist when we know what they are and how to fix them? Because some people benefit from them. The risks from natural disasters also fall disproportionately on the poor, which is why we don't invest enough to mitigate them. And so on.
In short, public health, no matter where you start from, leads you inevitably to social justice. Justice makes our species better off.
I'll be heading to the DC area tomorrow for a National Cancer Institute review panel. That's a bunch of people selected by an arcane process to review and score proposals for funding. That this panel exists, and that I am on it (for those who know or care to ferret out my secret identity as a mild-mannered reporter), is a matter of public record, but beyond that I'm not supposed to say anything specific about the proposals or our deliberations.
But this is a good occasion to talk about the peer review process at NIH. Congress appropriates money for what is usually collectively called biomedical research, but NIH also supports a certain amount of social science and public health research which is not strictly biomedical. In so doing, Congress conventionally establishes broad outlines of how the money is to be allocated among the various institutes (e.g., NCI, National Institute of Allergies and Infectious Diseases, National Institute of Child Health and Human Development, etc. -- you can see the entire list here) and may direct some amount of funding toward specific diseases or research problems. But the scientific community generally speaking does not like it when Congress tries to direct money to a specific study or investigator, and with few exceptions Congress has honored this convention.
Instead, NIH staff issue requests for proposals in various categories, using various mechanisms. Program Announcements are fairly open-ended, occasionally even catch-all funding streams that allow investigators to develop studies on their own initiative within broadly defined areas. Usually they include opportunities to apply for exploratory or pilot studies, with comparatively small amounts of funding, or large scale, fully developed studies using the so-called R01 mechanism. These remain open for years, and if you aren't funded the first time, you can revise your proposal and try again. Requests for Applications are one-time announcements seeking proposals to address more narrowly specified questions.
The review panels don't officially make the final funding decisions, but they are pretty much dispositive. Each member reads a few of the dozens of proposals that may be before the panel. Normally each proposal is read by three members. Then we write extensive critiques, and assign a score. The bottom half don't get discussed at the meeting, and don't get their score reported, but the applicants do get the comments. The rest get discussed, the critiques are revised, and final scores assigned. Then the relevant NIH national advisory panel makes the official funding awards. They seldom overrule a panel.
As you can see, this means that policy makers steer the funding only in general directions. In a meaningful sense, it is representatives of the community of scientists who rule on the merits of specific studies. This system is definitely imperfect, as I have observed as both an applicant and a colleague of applicants. One reason I wanted to do this is to get an inside look at it, because I would like to find ways to improve it. On the other hand, there are a lot of reasons why it's hard to improve upon. In the coming days, I'll take a look at the good, the bad and the ugly -- not with reference to this panel, as I am sworn to secrecy, but more generally.
Monday, July 10, 2006
Much business to do, in the fields of public health ethics and the perilous times, but for right now I'll stick to the knitting. The Organization for Economic Cooperation and Development, which is the club of rich countries, has released OECD Health Data 2006, which compares health statistics for its members. If you're really into this stuff, you can buy it here for a mere hundred bucks, or eighty Euros. Meanwhile, Rory Watson in BMJ (to which you can subscribe for a mere $37/year, or 30 Euros) summarizes the info on total health care expenditures.
It turns out that spending has increased faster than GDP in every wealthy country except Finland. The U.S. is still way in front - at 15.3%, up from 12% in 1990 -- but as our friend Ana pointed out a few days ago, Switzerland is trying to catch up, now a distant but solid second at 11.6%. The gap between the U.S. and the other wealthy countries is huge. Japan, whose people are very healthy, spends 8% of GDP on health care.
In the U.S. today, the average yearly cost for a family plan was $10,800 in 2005. It so happens that a full-time, minimum wage worker earns $11,000. In other words, if that worker had to pay for health insurance for a family, it would consume 100% of her income. Most workers don't necessarily realize this, but the employer share of their health care comes out of what otherwise would have been their wages. That's what economic theory and empirical studies show. So, as David Blumenthal in NEJM last week points out, there's a whole worker worth of cash being siphoned out of your paycheck.
This obviously has to stop somewhere, and there are basically two ways it can happen.
a) More and more people get squeezed out entirely by the high cost of health insurance, and inequalities in access widen. Rich people get the Cadillac ride, everybody else hitchhikes on a passing manure spreader if they're lucky enough to catch one;
b) We come up with a universal plan that limits the resources spent on health care and allocates them in a way that a social consensus accepts as fair.
Right now, this is happening in frog boiling mode, but an economic downturn will throw us in the fryolator.
Sunday, July 09, 2006
As long-time readers know, some years ago I was a juror considering whether Wayne S. Chapman*, a serial rapist of little girls, should be set free. In a sequence of legal events somewhat different from what happens today in similar cases, 15 years earlier Chapman had been given a suspended sentence following a guilty plea, and then civilly committed to the Massachusetts Bridgewater State Treatment Center for one day to life. Nowadays, a similar offender would first have served a prison sentence, and be civilly committed only after it was completed (or he was paroled, which in cases like this is highly unlikely).
Under the law prevailing when Chapman was committed, he had a right to petition annually for his release, his fate to be decided by a jury. Today, judges make this decision. In a criminal trial, we usually think of juries as an important protection for the rights of the accused, but in this inside out sort of trial, I'm not sure whether people such as Chapman are better off with a judge or a jury. However, I suspect that many people would not be inclined to trust judges in this situation and would say that as long as Chapman has a right to a trial, they'd rather leave it up to a jury.
Given the facts of the case, I imagine that some readers will feel he should not have had the right to petition for release in the first place. According to witness testimony in the police report, to which facts he stipulated in his plea elocution, he raped three little girls ages 7 to 9, one of them his own daughter, others neighbors to whom he had access. He used threats to get his way and insure his victims' silence, and he punched one of the girls in the face when he was unsatisfied with her cooperation. His crimes were only compounded when 12 citizens had to interrupt their lives and be subjected to the nightmarish details, which cost me more than a few nights sleep.
Upon entering Bridgewater, Chapman retracted his confession, denied his crimes and refused to engage in treatment -- for whatever that may have been worth. Yet here he was asking to be set free. No doubt most readers think this must have been an easy decision. A commenter on my most recent post on this subject does not feel that all people necessarily have inherent dignity or are entitled to compassion, and I imagine he would include Chapman among those who belong outside of the human community -- although at least he did not kill anyone.
You may be surprised to hear that the decision was not easy. We deliberated for three days. I was the foreman of the jury, as it happens, and I made up my own mind pretty fast, but others had a much greater struggle. In the end the vote was 10-2 that he should remain incarcerated, which was all that was necessary to decide this civil case. The two who voted to release him, believe it or not, were both fathers of young girls. The decision was difficult even though Chapman's lawyer was grotesquely incompetent, and the one expert witness on his side was bizarre and creepy.
We were charged with deciding whether Wayne S. Chapman was, if released, "likely to re-offend." We were given no definition of "likely." Judge Vierri Voltera visited us after we delivered our verdict to thank us and answer our questions -- a practice I very much endorse. When I told Judge Voltera that I would have liked a legal definition of "likely," he seemed surprised. It seemed obvious to him that it meant a greater than 50% chance. It seems obvious to me that most jurors contemplating whether to set this man free would consider a much lower probability than that to be too high.
So why was the decision difficult? First, as will not surprise you, we heard testimony that Chapman himself was horrifically abused as a child, including having his hands thrust into boiling water and being regularly beaten by a drunken father. He has a low IQ, was unable to finish high school, and was only marginally able to survive in the world. He had never enjoyed any dignity or respect, in his entire life. Finding his fate in our hands, all of us, as fully formed and compassionate humans, instictively knew that we were obliged to give him that respect.
The Treatment Center is a total institution, a place more tightly controlled than most maximum security prisons, where not only armed guards but highly trained psychologists determine every minute of every day -- every coming and going, every conversation, every scrap of reading. They put the prisoners through bizarre rituals, such as strapping the into chairs and showing them pornography while measuring their erections, forcing them to masturbate, then subjecting them to foul smells or electric shocks.
It was impossible to decide what the "probability" was of his reoffending. That is fundamentally a nonsensical proposition. We'd had excerpts from scholarly articles read aloud to us, but by the rules of evidence we weren't permitted to read the actual articles. There was a lot of testimony about whether raping his daughter meant he was more or less dangerous than if he had only raped non-relatives, whether three known victims was many or few. (His lawyer asked one of the hostile witnesses, "Who would you rather have babysit your own daughter? Someone who had only offended three times, or someone who had offended six times?" Seriously.) This was all just a lot of nonsense.
Here is the essence of the problem. There had been no trial, but he had pled guilty presuming that he would one day be free. The commitment was "one day to life," and no doubt they told him that he would get out once he satisfied his doctors that he was "cured." So perhaps the story of his crimes was exaggerated, but he never had the chance to defend himself, seeing the guilty plea as his best option. Maybe, as he now claimed, he was merely a molester, not a violent rapist. Some of the jurors thought it would be physically impossible to penetrate a 7 year old girl. I told them otherwise but we had no physical evidence or relevant testimony to consider.
Ultimately many of us were simply disturbed by the idea of condemning this man to such a weird circle of hell on the basis of what he might do, rather than what he had done. But in the end, that's what we did. I expect that there will never be a jury that will set Wayne S. Chapman free, unless perhaps he is one day so old and infirm that he seems physically incapable of atrocities. But every juror will be burdened by the experience, and the decision.
There are said to be three purposes for criminal justice: retribution and punishment, which proclaim and vindicate the social consensus on tolerable behavior; rehabilitation, so that people may be prepared to one day rejoin society; and disablement, in other words incarcerated people can't commit crimes, at least not easily. Generally speaking we don't do rehabilitation. They were and are trying to rehabilitate Chapman case but hardly anyone believes they know what they are doing -- me included. We were not supposed to consider retribution, which had already been satisfied in any case, at least according to the law.
But there is, after all, something that does not satisfy the interest of justice in keeping Chapman locked up as he is, for the sake of disabling him. His crimes might have been prevented had someone rescued him as a child. He did not make himself what he became. Ultimately, many people failed him, including us. But there was nothing we could do.
*By a very odd coincidence, another man named Wayne Chapman, a serial rapist of little boys, is also confined at Bridgewater. I mention this because the second Wayne Chapman is more famous, and I don't want to cause confusion.
Friday, July 07, 2006
I love the BMJ for putting medicine in its social and economic context. If we had the same habit of reality based thinking here in the colonies I wouldn't have to spend so much time swatting away stupid ideas.
One of the most important, biggest, and stupidest ideas stalking our once-proud country is the neocon push for "consumer directed health care," which means everybody gets really crappy health insurance with at least a couple of thousand dollar annual deductible, and tax exempt savings accounts which wealthy people can use to subsidize their out of pocket expenses -- they being the ones who can afford them anyway. The idea is, since we're paying out of pocket, we're in "control" of our health care and we'll make sure we get what we pay for.
So, Mala Rao and some colleagues from hither and yon in Albion -- where the people are no stupider than they are here -- asked some people 65 and older to assess the technical quality of care provided by their GPs using a standard survey, and compared the results to information from their medical records.
Whaddya know. Very weak correlations with appropriate measures for blood pressure control, and no correlation at all with influenza immunization. Listen folks, this is a no-brainer. The reason we pay doctors at all is because they are supposed to be experts. They know more about medicine than we do. It is good for most people to be reasonably well informed about health and medicine, and if we're diagnosed with something specific most of us will benefit from finding out a good deal about it. But if we were qualified to make all the decisions about our own health care, we wouldn't need doctors at all. I don't tell my auto mechanic that I don't need a brake job, because I don't want to die. But some people decide they can't afford one right now, and whaddya know -- they die.
While we're on the subject of blood pressure, I've mentioned before that the Limeys have an agency called NICE, the National Insitute for Clinical [and Health] Excellence, which reviews evidence and establishes guidelines for cost-effective medicine. NICE has decided that beta blockers should no longer be a first-line treatment for hypertension -- they just don't work that well. If you're under 55, go with an ACE inhibitor, if that isn't enough add a calcium channel blocker. That accords with my personal experience perfectly. My doctor first tried a beta blocker, which didn't work. Now I'm on an ACE inhibitor and CCB, and it works great. All generic, cheap. (Thiazide diuretics, the cheapest of all, are appropriate for some people but didn't work for me because I do a lot of hard work in the hot sun and they made me faint if I got dehydrated.) But in the U.S., we don't have a NICE. That would be a violation of our religion, called the Free Market, i.e. the right of drug companies to push stuff that doesn't work.
As usual these days, no post on Saturday, back Sunday.
Thursday, July 06, 2006
I don't know how many science blogs there are in the world, but we're number 40!, ranked 41,239 in the total blogosphere. (I don't know if that's with a bullet.) That means we must have a few readers we haven't heard from before, so by all means leave a comment and introduce yourselves.
Of the BMJ, that is. This article, by Scott Simpson and his basketball team, is available to the Great Unwashed.
It turns out that in placebo-controlled clinical trials for treatment of various life threatening conditions, people on placebo who were adherent had lower mortality than people on placebo who were not adherent. In some trials, of course, people who were adherent to the active intervention (the drug) did even better than the people who were adherent to the placebo, i.e., don't let the criticism of drug marketing and over-prescribing that you read here obscure the reality that yes, some drugs do actually work. (In two of the trials, the people who were more adherent to the drug had higher mortality than those were non-adherent, i.e. the drugs were harmful. That's why you do trials, I guess.)
But the point is that there are very powerful influences on our health which can't be measured out and put in a bottle. Some ineffable mixture of belief, self-efficacy, and generally trying to take care of yourself by listening to your Grandma and eating right, sleeping right, and declining to drink, smoke or chew or go with the girls who do -- or whatever it is, we don't entirely know -- is worth more than the $7,256 per person we spend on health care every year.
This also gives us a bit of insight into the placebo effect -- a powerful tool that you can't ethically use, because it depends fundamentally on lying to people. That's a knot I'd love to find a way to untie.
Wednesday, July 05, 2006
of the British Medical Journal, that is. It's actually worth a few posts here.
I'll start with a troubling problem we have discussed here a few times, one which inspires tremendous political passions, that is how to deal with sex offenders. There is a general perception, although the empirical evidence is weak and conflicting, that at least some categories of sex offenders are less susceptible to reform and more likely to re-offend than other criminals. And, people find sexual offenses, particularly against children or involving high degrees of violence and coercion, particularly reprehensible. Hence we have civil commitment procedures for people who have completed their criminal sentences, offender registration programs, restrictions on where offenders can live, etc.
These measures are very popular but they present ethical and practical difficulties. Can we really justify restricting the liberties, and even continuing to incarcerate people, who have discharged their debt to society, based only on what we think they might do in the future? Why do we treat sex offenders in this way, and not bank robbers? Ex-offenders have to be able to work and live with dignity, or else their risk of re-offending may be higher. (I don't know of quantitative research that shows this, but it's widely accepted among psychologists.) And of course, as a practical matter, we can scarcely afford to lock up large numbers of people forever. Sex offenses obviously vary in severity, and no doubt offenders vary in their likelihood of re-offending and subsceptibility to rehabilitation depending on their personalities, motives, nature of their offenses, age, intelligence, and other factors. Some degree of balance, and the ability to make distinctions, is obviously necessary. But we don't have a lot of good information to go on.
A technical fix that would help greatly to untangle this knot would be proof of effective treatment. Unfortunately, according to a review by Belinda Brooks-Gordon and Charlotte Bilby (BMJ 1 July, 2006), the existing evidence is weak and often conflicting. They found nine randomised controlled trials with a total of 567 male offenders, 231 of them followed for at least ten years. That's not a lot to go on to begin with.
In the ten-year trial, men convicted of pedophilia, exhibitionism or sexual assault were assigned to psychodynamic group therapy or no therapy. Alas, a higher proportion of the men in therapy were re-arrested -- although re-arrest is not, of course, the same thing as re-offending, and they weren't necessarily arrested for sex offenses. In general, completion of therapy is associated with lower rates of recidivism, but it's hard to know whether that's because the therapy is effective, or because more motivated people stay in therapy. Prospective, randomized controlled trials are nearly impossible to do, because allocation to treatment depends on decisions made in the criminal justice system, not random selection. Outcomes are hard to measure because we don't usually know whether people are committing offenses, but only whether they are caught.
My view is that there is a compelling social need for better information about this problem. But it doesn't get a lot of funding. People don't have much sympathy for sex offenders, most voters instinctively favor a punitive approach and just want these people removed from their community. But that is not an answer. It is better for all of us to have some degree of compassion even for the most despised, and to approach problems rationally, no matter how emotionally inflammatory. Many specialists have strong opinions about recidivism among sex offenders -- and it is probably lower than most people think, for most kinds of offenses -- but we don't have answers about how to reduce it further, or how to predict who is and is not likely to re-offend. We need to get those answers.
Update: Here's an article from the WAPO about castration as a solution. Somehow doesn't feel right, but some offenders actually desire it as an escape from their compulsions. The story of one guy who took matters into his own hands is astonishing. I don't have a snap opinion on this.
Tuesday, July 04, 2006
I feel I should acknowledge the occasion, but that means I must say what I really think about it, and that's hard. Patriotism has become a pernicious force in this country. As generally understood today, it is synonymous with willful blindness, moral idiocy, and repudiation of the very ideals which, when I was younger, were widely held to define American greatness.
Contrary to George Lakoff, the fundamental political debates these days aren't about "framing." In an essay today, Lakoff says that "progressives" and conservatives are arguing about the meaning of the words freedom and liberty. Here are some of the examples he gives:
Progressives: There should be a freedom to marry. The government should not be able to decide who can marry whom.
Conservatives: ``Freely elected" government officials should determine who can marry whom. That's what a ``free country" means.
Progressives: Social security, the minimum wage, universal healthcare, college for all are ways to guarantee freedom from want.
Conservatives: Giving people things they haven't earned creates dependency and robs people of their freedom.
Progressives: The 45 million working people who can't afford healthcare cannot all pull themselves up by their bootstraps. An economy that drives down wages to increase investor profits creates a cheap labor trap. The trap works against freedom from want.
Conservatives: Economic liberty comes through the free market; government gets in the way. Government works against economic liberty in four ways: regulation, workers' rights, taxes, and class-action lawsuits.
Progressives: Freedom of religion includes freedom from having a religion imposed on you.
Conservatives: Freedom to practice religion for fundamentalist evangelicals means spreading the good news of the truth of the gospel, which implies school prayer, ``under God" in the Pledge, the Ten Commandments in courthouses, and the teaching of intelligent design.
Progressives: The president's spying on citizens without a warrant is a violation of freedom.
Conservatives: The president is just doing his duty to preserve our freedom.
Lakoff's scheme is procrustean. First of all, he is conflating right wing libertarians, neo-fascist imperialists, and Christian dominionists. They happen to have formed a political alliance of convenience, but they don't believe the same things. And once you recognize that, the false symmetry becomes obvious. Christian dominionists don't believe in freedom at all. They don't equate banning gay marriage (and what they really want to ban is homosexuality), teaching intelligent design, having organized prayer in school, and basing the law on the Bible with "freedom." They equate them with virtue, and they consider freedom (which they tend to call license) to be the enemy of virtue.
At the same time, libertarians don't want so-called "free markets" (which is merely a rhetorical device referring to a particular way of organizing and regulating markets) in order to set poor people free. They want "free markets" to further enrich and empower the already wealthy and powerful -- who pay them for their opinions. That many of the same people appear -- apparently contradictorily -- willing to tolerate abandonment of civil liberties, imposition of autocratic rule, and the pursuit of military hegemony merely demonstrates that they have faith that the autocrat will always be one of them, and use his powers for their advantage. They do not expect him to be unaccountable. They only expect him to be unaccountable to the mass of people through a democratic political culture and republican institutions. Of course he will always be beholden to the ruling class.
So enough with this "framing" nonsense. What we have here is a struggle for power. And it is the outcome of that struggle which will determine whether I feel loyalty to the United States.
Monday, July 03, 2006
A couple of years ago, the National Association to Advance Fat Acceptance held its annual meeting in the Boston area, and they're coming back to Boston this year. NAAFA summarizes the problems its members confront:
An estimated 38 million Americans are significantly heavier than average, and face societal and institutional bias because of their size. Fat people are discriminated against in employment, education, access to public accommodations, and access to adequate medical care. In addition, fat people are stigmatized, and are the victims of tasteless jokes and assaults on their dignity. Despite evidence that 95-98% of diets fail over three years, our thin-obsessed society continues to believe that fat people are at fault for their size.
Of course, more and more people in America are fat (which is what NAAFA members prefer to be called -- euphemisms only serve to suggest that it's shameful). The Boston Globe today reports that this is a new business opportunity -- wider seats, bigger clothes, all to serve a growing market. (Sorry about that.) My doctor's office now has double-wide chairs for those who need them. There are three ladies in my neighborhood who ride the subway to work together, who take up six seats among them. Last night at my local watering hole, some of the regulars were discussing their friend who weighs 450 pounds. They'd had a party and ordered five pizzas, and he ate four of them.
When NAAFA was last in town, two of its leaders appeared on a public affairs show on our PBS station. They were absolutely right that it is unconscionable that fat people endure discrimination, humiliation, and blame. However, they also claimed that there are no health risks associated with extreme overweight. Each of the women weighed well over 300 pounds, and they were adamant that they were in no danger from this condition. They insisted that claims that obesity is bad for you are slanderous lies.
I'm afraid I can't go that far. There is some legitimate disagreement right now about the risk associated with being what is now defined as moderately overweight. But there is absolutely no doubt, not a shred, that severe obesity -- which definitely describes both of them -- places people at high risk for diabetes, heart disease, and early death, as well as osteoarthritis of the lower extremities and other orthopedic problems. It's easy to see why people who have suffered from discrimination and ostracism would want to proclaim that everything is positive about their condition. So the irony (I think that's the right term) is that if fat people were accepted, and the cruel jokes and mistreatment were to end, it would be easier for them to accept the health consequences of obesity -- and in fact, they would probably have more success at managing their weight, if that's what they chose to do, and any health consequences of excessive weight.
The epidemic (if that's what you want to call it) of obesity is a consequence of an environment which is radically different from the one in which our ancestors evolved. It's not the fault of fat people that they are fat. We can certainly think about ways to change the environment to make this problem less common. Meanwhile it's treated as a medical condition, and as is the case with so many of the problems we discuss here, that is often counterproductive. I'll have more to say about that later.
Finally, of course, death is not the worst thing that can happen to us -- which is fortunate indeed or life would be pointless. Nobody lives forever, and if somebody concludes that struggling against fatness is just not worth it to them, there is no reason not to respect that choice.