Thursday, April 16, 2009

A Health Care Jeremiad (Second in a series)

Our health care system, particularly the way we fund research, reminds me of the old Tom Lehrer line about his doctor friend who specialized in "diseases of the rich". And if that joke is funny about just one doctor, think about how the hilarity compounds when it applies to an entire system.

Research, care, and resources directed at a particular disease are driven by concern. Concern is driven by awareness. Awareness is driven by the amount of energy and volume those affected by the problem can muster. Anybody see how the deck is stacked against Parkinson's sufferers here?

But just to make things more interesting, there is the effect of the celebrity wild card. If somebody famous and widely liked, an actor, an athlete, gets the disease... BING! BING! BING!... suddenly they're testifying before committees and Congress finds a way to wrap money for the problem into the next passing bill. Even better, a member of Congress should get sick. Then their peers can really relate, and they'll cry while they pass it. So you're set. For a year. Repeat until cured.

This is weird enough at the policy level but it gets downright warped at the level of the individual. This is the level where I'm shocked by decent caring people who say things like "It's lucky that Michael J Fox got PD. Now we get attention and funding." But why should that be shocking when I've privately thought the same thing?

Ignoble, Selfish. Obviously wrong on so many levels. And only human.

So must we add shame as another effect of Parkinson's Disease? Here's a way out. We should rephrase the thought to accurately express what we really mean. People renowned and obscure get Parkinson's all the time. None of us is happy about that. But not all of them react the same way. Some retreat, and lie low. Who can blame them? Others, like Fox, or Muhammad Ali, or thousands of lesser-known but equally courageous people with ravaging conditions go forth to meet their adversary with all the intelligence and energy they can muster. It's not lucky for the rest of us that they got our disease. It's lucky they are doing something about it.

And, not today, not tomorrow, but surely over time, their effort and courage will bear fruit. And that is something we should feel grateful for. That is something we may celebrate.

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