Saturday, February 05, 2005

paranoia, justified

It can be hard to relax when you have a child with major medical issues. Even something as innocuous as a trip to the grocery store can be nerve-wracking at this time of the year, as I try to steer the grocery cart out of the path of every sneezer, cougher, and sniffler walking the aisles with us. I remember my own days of thinking nothing of going out in public with a cold, so I understand why those walking germ factories are rubbing elbows with us, but, as the parent of an immunocompromised child, I have to say it drives me nuts.
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Even safely ensconced in our own home, with the faint whiff of bleach cleaner in the air as testament to the daily anti-germ campaign, I find things to set off new worries. For example, there's our nightly ritual of unwinding with a cup of herbal tea on the couch, watching some bad show on TV. When I was in the hospital with Annika, Joerg used to call me a masochist for watching ER. He was right, really. What's the entertainment value when the issues being dramatized are poised to become your next new paranoid worry? Recently, I switched channels to watch the season premiere of Medical Investigation. The opening scene showed a baby dying as doctors worked frantically over its tiny body. "OK, that's it for me. Good night!" And with that Joerg was out of there so fast I didn't even have time to respond. But I stayed on to the bitter end, masochist that I am. At one point, the doctors thought that the babies were dying from some vicious strain of bacteria. Half of the final list was bacteria that Annika had been infected with pre-transplant. Now, why in the world would I keep watching to see if the babies would win their battle with the bacteria, just to remind myself how narrowly the battle was won in Annika's case? In the end, it turned out that the infections were actually viral, anyway, but it was still a weird sort of freak-out moment when I recognized all the names and acronyms being thrown out, and mentally added my own favorite bacteria, as well as shouting out suggestions of alternative antibiotic therapies for the "doctors" to try. So I really shouldn't watch these shows, but somehow I just can't break free from their tractor beam. Also, I really shouldn't watch Medical Investigation because, geez, the writing is terrible, and all that eye rolling might be making me more near-sighted.

And it's not just TV. We are also magazine junkies. The New Yorker and The Atlantic Monthly are my usual fixes, and some issues are chock full of articles that get my worry gene going. Last month, The New Yorker ran an article, The Pediatric Gap, discussing the abysmal lack of pediatric testing of drugs commonly given to children. The problem is that drugs may act completely differently on young patients than they do on adults, due to major differences in the way that an immature system deals with the drug. And yet very few of these drugs are actually tested on kids before being released for general use, leading to some very scary outcomes, even in generally healthy kids. Of course, reading the article, I was ticking off the number of drugs mentioned as potentially dangerous for kids that Annika had had in her four short years. The grand total was 5, including 2 sedatives that she had just been given in the two preceding days. And the drugs listed in the article were not those that we had been told might be dangerous for her, and there were certainly plenty that we were warned could have serious, adverse side-effects. The quotable quote from the article is from Maureen Strafford, a Boston pediatric anesthesiologist and cardiologist, “It’s what I call the reverse lifeboat phenomenon...In medicine, children come last.”

In general, I would say that Dr. Strafford's quote is bit too general (perhaps there was more context that was not included in the article?). We have found that, for healthcare personnel anyway, children often come first. But this is evidently not the case in the world of pharmaceutical companies and medical equipment manufacturers. The image of pharmaceutical companies has taken quite a hit recently in the media. And it's not just the serious news reporting on massive drug company profits while prescription drug costs pauperize many elderly patients. E.R. (my personal barometer for medical issues) recently featured an episode in which the drug companies were essentially serving as corporate johns to doctors who were paid to prescribe the company’s expensive drugs, without mentioning possibly nasty side-effects (leading to the patient's loss of a transplanted kidney--oh, the vast array of scenarios to keep me awake at night).

Yet I found myself sympathizing a bit with the pharmaceutical bad guys because of this article, Don't Do the Math a few weeks later, pointing out that companies are often better off not doing risk analysis when it comes to jury damage awards. James Surowiecki
interviewed Harvard law professor W. Kip Viscusi, "[who] has shown that people are inclined to award heftier punitive damages against a company that had performed a risk analysis before selling a product than a company that didn’t bother to. Even if the company puts a very high value on each life, the fact that it has weighed costs against benefits is, in itself, reprehensible." Of course, one would wish that companies would simply make better decisions when it comes to interpreting risk-benefit ratios. But it also seems that the article conflates two different ideas of "benefit." In the G.M. case, in which engineers figured the dollar cost of moving the gas tank versus the dollar cost projected for settling wrongful death lawsuits, the benefit was quite baldly company profit. In the recent case of Vioxx, the benefit-risk analysis counts as "benefit" a significant improvement in the quality of life for patients. But, yes, company profits must be in that calculation somewhere as a benefit as well.

If simple risk-benefit analysis can be so damning overall, just imagine how hard companies would get hit if there were the vaguest hint of knowing that children were at risk. The path of blissful ignorance becomes much more understandable.

There is so much good in our system of healthcare, but so much that just so plainly needs to be fixed. The question is, can it be fixed in a way that does not permanently hobble the parts that make our healthcare so effective?

While not contemplating how to fix the entire healthcare system in our country, I think I need to at least stop watching any TV show that has characters shouting "Stat!" at one another.


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