September 13, 2006
From the desk of Jane Galt:How sick am I?
I don't want to write reminiscences about Ground Zero or 9/11 right now, because then, as Laura says, it makes the story about me rather than about the 3,000 people who died that way. (Jim Henley put it much more pungently.) I have no urge to watch made-for-tv movies about the day of death, or Oliver Stone's fantasies, or very special television events on cable news channels. I'd much rather we'd commemorated 9/11 by trying to recapture some of the national spirit of brotherhood and solidarity that gripped America in those first days.
But yesterday someone asked me about something that is in the news, and that I am qualified to comment on: "WTC syndrome". As it happens, I did watch a television documentary on that the other night. Since I spent a year in a trailer in the middle of the site, failing to wear my respirator as directed1, the commercials for those sorts of shows speak to me rather directly. They say "Want to find out if you're going to die horribly at an absurdly young age?"
(continued below the fold for those who are interested)
Michael Fumento says that WTC Syndrome doesn't exist. He's extremely critical of the WTC health project at Mount Sinai, where I periodically go to get my breathing checked and have an earnest 22-year-old ask me whether I have thoughts of suicide.
I wouldn't go as far as Mr Fumento, though I think that there is much merit to his criticisms. Medical studies (other than for pharmaceutical approvals) are notorious for their poor design and willingness to draw conclusions from insufficient data. The figures confidently thrown around about how many WTC rescue workers are now sick are a good example. Only about 1/4 of the workers from Ground Zero are participating in the programme. Those who feel sick are much more likely to be trekking up to 106th Street in Manhattan (where most of the workers do not live or work) to get tested. Yet the media has repeated figures from the programme as if it were a double-blind, controlled study.
Moreover, everyone seems to be ignoring the enormous financial incentive that the cops and firemen have to be sick. Thanks to the immense amounts of overtime they received during the first few months of the recovery effort, many of the police and firemen who worked on the site had the highest earnings in 2001 that they will ever have in their lifetimes. If they retired by 2004, those earnings would be factored into their "average salary" calculations. Both departments, as I understand it, saw a huge wave of retirements among eligible rescue workers; I would be shocked if the same factor wasn't driving at least some of the illness--since disability pensions are at least as generous as retirement ones (or so I'm told). I'm not saying they're shamming, mind you; if people can time their death to avoid the estate tax, I have no doubt that they can cough to collect a pension. There is very good evidence2 that we could cut down on chronic back pain considerably by ending worker's compensation coverage for back injuries.
Another enormous problem is that whenever people are involved in an enormous event--the gulf war, the Indonesian tsunami, 9/11--they tend to attribute anything abnormal that happens to that event. Some people who lived in the area or worked on the site were going to get sick, even die, even if the terrorists hadn't managed to hijack those planes. But because it happened after the buildings came down, the natural instinct is to attribute the sickness to the collapse. I confess I am extremely suspicious of people who lived blocks and blocks away from the site, claiming that the dust the collapse left in their apartment made them sick. I'm an asthmatic who spent a year in a trailer right in the middle of the site; if it didn't make me sick, I doubt it made you sick in your Tribeca loft. Again, I'm not saying these people are shamming--only that they're committing gross attribution errors.
And I'm not sick. Because I'm asthmatic, I, unlike most of the recovery workers, actually knew what my lung function was before 9/11. All three areas of lung function are within a coupld of percentage points of what they were measured at before I worked at Ground Zero. I suspect this matters a lot. If you tell someone who has never had a spirometer before that they're only at 93% of normal lung function, I'm sure they freak the hell out and decide they're dying. But my bronchial function is only around 66% of normal, and my asthma is extremely mild. (My upper lung function is much better). And those people are probably much more likely to come back than the guy whose spirometer showed his lungs functioning at 106% of normal.
The media coverage of the "syndrome" makes it all worse. One of the deepest seated fears humans have is of being poisoned by something they can't see--that's why radiation is so much more terrifying than cars. Tell people that their time on the site infected them with invisible particles that are making everyone terribly ill, and every time you clear your throat, it becomes a symptom of your "disease". I have one of those doctors who tests everything, just because he can. After a "borderline equivocal" test for anti-nuclear antibodies (which signal autoimmune disease), I became convinced I had lupus, and was dying. Suddenly every time my foot fell asleep, it was neuropathy. Every twinge of pain in my chest was impending heart failure. If my wrist ached after a long session at the computer, I was convinced it was the first sign that the disease was attacking my joints. Needless to say, these symptoms, which would ordinarily have been forgotten as soon as they happened, were magnified in my mind into a nearly crippling disorder--until time revealed that there was no reason to believe I had lupus, and they suddenly receded back into transient manifestations of everyday life.
That said, I think that the site probably did make some people sick. There was a lot of crap floating around in the air--more than normal on a construction site, and much of it really bad stuff like finely pulverized asbestos. After a few months I developed two very strange symptoms. I broke out with a skin condition then diagnosed as rosacea, but which has since pretty much completely disappeared, which rosacea doesn't do. I also developed a weird twitching in my left pinky, which likewise slowly disappeared after I left the site. Coincidence? Very possibly. Or possibly not. I don't suppose I'll ever know (and doesn't that drive my inner scientist bonkers!). But I'm a lot more worried about asbestosis.than subtle poisoning from the air. Frankly, my attitude now is that I will be very unhappy if some dread disease does appear--and that I will not reduce that future unhappiness one iota by worrying about it now. So I don't. I suspect that at least some of the rescuers would feel better if they adopted that attitude.
1Yes, I know--my class action against Osama Bin Laden just went right out the window. I expect that some years from now, we'll see lawsuits against someone, in which construction workers or police or firemen allege that they wore their masks all the time. This is a lie. No one wore the damn things, because it is not practical to work for sixteen hours a day, every day, in a gas mask.
2I mistakenly attributed this sentiment to Mark Kleiman at the beginning of the post, for which I apologise.
Posted by Jane Galt at September 13, 2006 9:22 AM | TrackBack | Technorati inbound links"); ?>Shouldn't it be possible to do some kind of placebo-esque tests for things like this? In order to get a baseline reading of how likely people are to associate symptoms like this?
For example, as a public health initiative, announce that a radioactive spill has contaminated certain areas, instruct doctors on common symptoms to look for, and then identify someone that you could sue for damages. It would of course be dependant on the people involved, so maybe you could control for it by "contaminating" differing geographic/demographic regions.
Posted by: Brian Moore on September 13, 2006 10:46 AMYou jumped the shark with this statement:
"Medical studies (other than for pharmaceutical approvals) are notorious for their poor design and willingness to draw conclusions from insufficient data."
It would more accurately depict reality if you had written:
Medical studies (especially for pharmaceutical approvals) are notorious for their poor design and willingness to draw conclusions from insufficient data.
See, for example: http://www.pbs.org/wnet/air/episodes_102.html
"...the nation's biggest drug companies now farm out much of their experimental drug-trial work to for-profit centers whose practices are monitored by other for-profit companies, all of them paid by "Big Pharma." This conflict of interest, as the magazine reports, has led to egregious incidents."
Posted by: Aaron Adams on September 13, 2006 11:53 AM
It's a simple fact of life that smoke, in whatever form, is harmful if breathed for extensive periods of time.
Smoke was prevalent in Kuwait during GW I (burning oil wells) and led to the so-called Gulf War Syndrome. But it's not an infectious agent, and some people are much more susceptible than others.
Some people get lung cancer from smoking; many don't.
That's life.
Posted by: Rex on September 13, 2006 12:10 PM"Twitching Pinky".
That was probably a sign of stress (emotional, physical, mental). Probably it was the same with the rash.
The mind can make the body do some pretty strange things.
I think asbestosis and other scarring of the lungs would show up fairly quickly in a chest x-ray. And that's what the WTC syndrome proponents have been pushing. Horrid chest x-rays of a couple of Ground Zero workers are out there. I'm thinking that they may have cherry picked a few x-rays from people who were horribly affected by the dust.
Posted by: Xmas on September 13, 2006 12:15 PMRelating to Aaron Adams comment--
This is pure hearsay, but my impression is not so much that the big pharma papers are inherently flawed in methodology, but that the overall "research" process is flawed: It is the papers that don't get published (because they don't show the desired results) and the selective publishing that occurs because of that.
Posted by: Dean Chung on September 13, 2006 12:51 PMYour post reminds me that I've been remiss in following up on your thyroid condition. (Don't tell Cuddy -- the hormone shots are making her crazy.) So, how is the goiter -- I mean the Hashimoto's Thyroiditis (as you called it)?
Posted by: Dr. Gregory House on September 13, 2006 2:55 PMHas there been any attempt to determine whether the Ground Zero workers have higher-than-average rates of cigarette smoking? If they do, that might explain quite a bit.
Posted by: Peter on September 13, 2006 2:56 PMOliver Stone is doing a documentary about the WTC counterattack? I thought only ABC and Disney were doing that.
Got to figure it's going to happen some day. Probably a Bollywood special ending with the suicide bombers meeting lots and lots of blond virgins in Paradise. Probably black and tan virgins, too. For variety.
In response to Aaron Adams above, as someone who works for a drug company, I can tell you that we actually do have to run the studies well enough to determine if we should take a drug to market or not. We do that for a reason that we find highly interesting and relevant: money.
Phase III studies can cost you a hundred million dollars before you know what hit you, so you really, really want to be sure that you want to go there. Oddly enough, we also try to run these studies very well so that we can persuade the FDA that our drugs work, which (despite what you might have heard) is not easy, and so that we will not be sued into oblivion should our drugs go out and poison people. Money, again.
If we could fake up a bunch of fluff and get by with it, there would be an order of magnitude more pharmaceuticals on the market. They wouldn't be doing an order of magnitude more good, that's for sure, but companies would be out there selling them.
Posted by: Derek Lowe on September 13, 2006 5:01 PMThe discussion got me thinking about this delicious analysis: Why Most Published Research Findings Are False.
Enjoy.
can you tell me what this is about....
Gunman Kills One, Wounds 19 in Shooting Spree at Montreal College
Posted by: opie on September 13, 2006 8:55 PMWhile I have no reason to doubt the personal integrity of Derek Lowe, this statement
"...as someone who works for a drug company..."
inevitably leads one to the question, as Freakonomics says, "What's the incentive here?"
Of course, if I worked for a drug company, I would want to believe my company and the industry in which I worked was entirely ethical and above board and wouldn't, for example, corruptly try to delay the introduction of generics just to pad a company's bottom line. I might even shy away from seeking out information, no matter how reliable, which might tend to call into question my sincerely held faith.
The Pulitzer Prize winning series of Bloomberg articles on which the documentary I linked to above was based clearly established the whole for-profit (versus Hospital supervised-the way it used to be done) industry of clinical trials of new drugs is inherently flawed and in quite a few cases corrupt. There are no checks on ethical violations (4 FDA inspectors for the whole country), faulty study participant screening processes and cursory at best background checks on the individuals running the private companies actually conducting the contracted out trials or the inter-relationships of the private companies actually conducting the trials and the for-profit companies supposedly monitoring the ethical integrity of the trials.
While it can be reasonably assumed not all clinical trials are flawed or corrupt, some clearly have been and there is no way to know, under current FDA policies and oversight, which onea are and which ones are not.
If nothing else, ENRON and other corporate scandals of the not too distant past should have taught us that money, which is a powerful incentive indeed, often incentivizes bad behavior too. Money is a slender reed on which to base an argument for a for-profit clinical drug trial industry to always act on the side of good science and ethical behavior.
Posted by: Aaron Adams on September 14, 2006 12:45 AMI remember back in college, we had a representative from Searle (a subsidiary of Monsanto) come to our biotech class and explain how COX-1 only had a role in fetal development and no function in adult human beings. This, of course, was in relation to their rollout of Celebrex, their new selective COX-2 inhibitor which was supposed to similar to but safer than Aspirin.
Now, of course, we find that COX-1 has a role in chronic inflammation and those daily doses of Aspirin help prevent heart attacks in ways Celebrex didn't. Whoda thunk it? Certainly not someone on Searle's payroll...
BTW Jane, how'd you manage to find such a wonderfully thorough doctor?! My sister just got told that she 'was fine' despite some very real, chronic, debilitating back pain. Of course, she's not 'fine' at all, but most doctors are too damn arrogant to admit that of course somthing's very wrong or she wouldn't be hurting but they can't find what it is. Of course, they still want to be paid...
Posted by: Ryan on September 14, 2006 5:20 AMAaron A., I'm not maintaining that drug companies are angels. We're the same as any other industry. Companies will most certainly push every envelope they can find to extend the patent life of their drugs (and it's not like I approve of many of those tactics, either, as I've said on my blog). The recent attempt at a Plavix deal, for example, was not only ethically questionable, but objectively idiotic.
But companies do these things for money, of course, to make more or lose less. And that's why the corners you see being cut in the clinical trials business are largely done in order to get them going faster, make them bigger, and get the results sooner. If you cut corners in a way that obscures the data, though, you're asking for major trouble, and a company that does that deserves whatever it gets.
Posted by: Derek Lowe on September 14, 2006 8:55 AMDerek - and a company that does that deserves whatever it gets.
Just curious, what do they get?
And how do you define 'obscures the data.' Monsanto didn't test their roundup ready soybeans using soybeans that had roundup applied to them.
Shouldn't that be considered 'obscuring the data' since it deliberately didn't test the product in the conditions which it would exist? Or did you have somthing else in mind?