Wednesday, April 8, 2009

A Health Care Jeremiad (Part one)

"April is the cruelest month"
-T.S. Eliot

April is Parkinson's Disease Awareness Month. It is also Sexual Assault Awareness Month, Mathematics Awareness Month, Workplace Conflict Awareness Month, Irritable Bowel Syndrome Awareness Month, National Cancer Control Awareness Month, National Autism Awareness Month, STD Awareness Month, National Child Abuse Prevention Month, Tsunami Awareness Month, Counseling Awareness Month, Earthquake Awareness Month, and the list goes on. And what a list! As you look it over you will not be surprised to learn April is also Stress Awareness Month. To which I'd drink, except that it's also Alcohol Awareness Month.

Show of hands: How many of you out there actually knew that April was the month that you were supposed to be aware of

All of the above?

2. Three or more of the above?

3. Any one of the above?

As a guy who had to Google the phrase "April awareness month" to come up with everything but Parkinson's on this list, my hunch is most hands went up on 3. This suggests that dedicating a month to make people aware of something they do not particularly want to think about in the first place is not a winning strategy.

So how does a supplicant make their cause stand out from the throng? Whether it's a hearing room in Washington D.C. or a Board Room in San Jose, what you need is volume, and a champion with star power. Which is why so many of us appreciate Muhammad Ali and Michael J.Fox. Both have used charisma and strength of character to attract sympathy and money to the cause of ending Parkinson's Disease.

This is great for those of us who suffer from PD. I hope to benefit from it someday. But as health policy, it is pathetic. Rather than taking a systematic set of criteria that would rank research priority by, say, rate of disease in the general population, or rate of fatality, or cost to treat, we have a popularity contest. Jackpot if you share your malady with someone appealing on a scale grand enough to sway research dollars in the direction of your problem.

If this doesn't seem unfair to you, consider the inverse. What if you shared a health problem, maybe addiction to prescription pain pills, with someone despicable, say, a loudmouth thug from talk radio? And then suppose the powers that be decided to subtract from the budget for addiction research because of the antimagnetic personality of the high-profile pillhead? Why should a perfectly lovely person like you suffer because of your unwilling and random association with this jerk? And, to return to the original question, isn't it just as arbitrary to benefit from association with a worthy person like Ali?

Because of the nature of the disease, the Parkinson's field has struggled under this system in the past. Parkinson's research suffered for years precisely because the disease tends to turn its victims into quiet people who avoid the spotlight. People who avoid going out in public. Who are embarrassed by tremor. Who are tired of being accused of being drunk because of their poor balance and slurred speech. Lobbying under these conditions is a formidable and forbidding task

Scene: A brightly lit hearing room where a person with Parkinson's, their symptoms aggravated by stress, attempts to make their case. "Can those of you in back hear me? No? Those in front? I'll try to slur directly into the microphone" It's hard to be the squeaky wheel when you can't even audibly squeak.

There are a dizzying array of interacting factors in the complex set of questions about allocation of research priorities. It is hellishly difficult to know how best to foster the greatest good in choosing among worthy areas. It may be so complicated that it's impossible to avoid a decision that is not arbitrary at some level. So maybe this is the best we can do. But have we even asked ourselves that question?

Trying to choose between diseases is partly a self-imposed predicament. We could skirt these choices by deciding as a society to devote more to health research in general. There is much we could do that would make us all proud of if we made the pie bigger.

Oh. I forgot. We gave all the pie to the wizards of banking who crashed our economy by operating heavy financial equipment while intoxicated with greed. Don't these people read the warning labels?

I guess it will come back to haunt them when they get their Parkinson's or cancer diagnosis.

At which point they will join us in the system. I sure hope we've gotten it reformed by then. Because with research funding to some degree a popularity contest, they'll bring in enough unpopularity to set all of us back decades.

(Part one of a series.)


Joe said...

Great post. And how apropos is it that PD awareness month is shared with Irritable Bowel Syndrome awareness month? There are days when it seems the stress of dealing with the former is more than enough to give me symptoms of the latter.

Peter Dunlap-Shohl said...

Thanks Joe,

I feel for the people who have to walk into a politician's D.C. office and say "Where do you stand on Irritable Bowel Syndrome?"

Festinate forward,