Tuesday, November 23, 2010

Death, Taxes and Certainty

Benjamin Franklin wrote "Our new Constitution is now established, and has an appearance that promises permanency; but in this world nothing can be said to be certain, except death and taxes." Looks like the government has managed to screw even that up.

I worked hard -- I mean, time away from the kids, flying across the country, up at 4 am hard, to help Barack Obama get elected. Life is complex, and anybody who tells you that they did something hard for just one reason is either lying or deceiving themselves. I worked for Obama for many reasons, but at the top of the list was health. Namely, making sure that my children didn't become permanently ineligible for insurance if they are diagnosed with a health problem (i.e. a pre-existing condition).

My focus on pre-existing conditions isn't just a random fascination. When I was a little kid, I would become disabled sometimes when I got a fever. I would just lie down and my muscles would ache too much to move. My father is a doctor, but neither of my parents really knew what to do about it or why it was significant. They cared for me and eventually the fever would clear up and I would feel better.

Fast forward to 7th grade when I got sent home with a note from my PE teacher saying something like "your son has an extremely low pain threshold, he needs to suck it up and exercise harder." My reaction was to internalize it -- yup, I was a wimpy kid, not able to hold my own in the pain department, as disappointed with myself as my teacher was with me. Except that I now know that the searing pain I felt with every step during some of those forced PE runs was real. And with each step I was walking closer to kidney failure.

Still undiagnosed, I hung out with a friend on Halloween as a teenager. Some mean older kids chased us, threatening to hit us with the chains they were swinging. By the time I got home I could barely walk, my urine was the color of coca-cola, and even though we escaped the assault, my body felt as if we hadn't.

Finally, years later I felt similar symptoms come on and I saw a doctor who was insightful enough to order a CPK test. A few more tests and we had a cause: A rare muscle disorder called CPT2 deficiency. Wow, I had one of the muscle disorders that the Muscular Dystrophy Association works to cure. At least the horrible, repeating echo of my PE teacher's words was wrong -- I knew that I wasn't the weak-willed child he thought. Instead, I was the boy who pushed on through the searing pain that I now know, thanks to the diagnosis, was real.

I have three girls. Luckily, CPT2 is very rare. So rare that it is very unlikely that my kids would have inherited the requisite defective gene from both parents (actually it is a bit more complex as I have only one defective gene and that places me in the subgroup of people who have an unknown additional mutation that combines with the single defective gene to cause the CPT2 symptoms to occur). But rare or not, I worry that my children may have this disease. There is an easy genetic test to rule it out -- and if they do have it, I can help protect their health by altering their diets (if you know you have CPT2, many people, including me, find they can control it by diet alone).

I was faced with a terrible choice: Get them tested OR preserve their ability to get health insurance. My concern was that even a "negative" test that shows only carrier status for this rare disorder may be enough to make insurers, who don't like things they can't predict, refuse to insure them. If my child loses her job 30 years from now, would she be unable to get insurance on the open market?

So you can understand my incredible relief when President Obama signed the health insurance reform law. I would wait until the provisions preventing denial of coverage for pre-existing conditions for children went into effect, and then I would promptly test my children for CPT2. Best of both worlds, I thought -- I can get them diagnosed AND leave them eligible for insurance coverage regardless of the results. Of course, this is how any rational system should work, instead of punishing people for obtaining the information they need to better manage their health.

Unfortunately, before the effective date of the provision banning insurers from denying coverage to children with pre-existing conditions, Republican candidates had started to demand repeal of this law. I held off further to see whether this chorus would get louder, and unfortunately it did. The half-promise to pass a new law preventing insurance refusals based on pre-existing conditions seems an obvious smoke screen -- for decades this reform had been promised, and Republicans never moved an inch to make it real. No way they will repeal that provision simply so they can pass it again.

This is a case of repeal by threat. Without even repealing the law, the mere threat to repeal it creates the very uncertainty that forced me to balance the best medical course (test them!) against the best overall course (retain ability to get health insurance). As Justice Marshall wrote, the value of the Sword of Damocles "is that it hangs--not that it drops". The threat of relegating my children to a lifetime of having to rely on employers for health insurance, of never being able to be self-employed without losing their coverage, is again too real to ignore.

I'm not asking for a government handout. My main concern is that the law may be changed so that, try as I might, I will not be able to find an insurer willing to take my money in exchange for covering my children. All I want is to be able to plan for my family's medical care without having to look over my shoulder wondering if medically sound decisions will ultimately be punished by an exile into the ranks of the uninsured. In short, the repeated Republican complaint that the government will prevent people from seeing the doctor they choose may well come true if the Republicans repeal this law and allow health insurers to drop my children -- effectively keeping them from seeing their own doctor.

So I am holding off on getting the tests done until there is a bit more certainty. It is immoral that Republicans are threatening to repeal the entirety of the law, even the part that promises children that they will each enter adulthood eligible for medical insurance. But immoral or not, it would be irresponsible to ignore the threat. So it is back to checking my baby's diapers to make sure her urine isn't brown, back to asking my other daughters how their muscles feel whenever they get a cold, back, in short, to medical techniques more suited to the bronze age than to the sole superpower on earth.

So why the inclusion of "taxes" in the title? Because uncertainty hurts. Just as uncertainty about medical insurance law is displacing medical need as the driver of medical decisions, so too does uncertainty about tax policy displace business needs as the driver of business decisions. It is unacceptable to go year-to-year hoping that the government fixes AMT next year. It is also unacceptable to close in on the end of 2010 without knowing what the tax rates will look like in 2011.

To be clear, I think it is far better to let taxes for millionaires go back to where they were during the Clinton economic boom than it is to put money borrowed from China directly in the pockets of the ultra-rich. But regardless of what the decision is, it is irresponsible to keep putting it off. This artificial emergency may have been created by Bush's decision to use a ten year tax plan to avoid a filibuster and to minimize the projected cost of the cuts, but artificial or not and however created, every person in this country is guessing as to what their first paycheck in January will look like. To imagine that this uncertainty is not dragging the economy down is deluded.

So what is the upshot? Uncertainty is dangerous. It is unacceptable public health policy. It is unacceptable tax policy. It is, unfortunately, something that politicians with "an extremely low pain threshold" find far easier to live with than the hard work of compromise and cooperation.

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