The chorean war

August 18, 2008

As a persistent and strident critic of excessive federal spending, I feel compelled from time to time to comment on a national program that seems defensible. One of those is the “orphan products” program of the Food and Drug Administration.

Drug companies are reluctant to do research on diseases that won’t give them millions of customers for the drugs they produce. Given the billions they have to spend on research and development and government requirements, in order to make a profit they would have to charge a price no customer could afford. So they concentrate on things like cancer and heart disease and obesity that gurantee a steady customer base. (OK, your Big Pharma-bashing can go in here.)

Under the orphan-products program, the federal government gives financial incentives and patent considerations to companies that deal with diseases that affect fewer than 200,000 people. It’s been in the news lately because, under its provisions, the first drug ever for the treatment of Huntington’s disease has been approved: It won’t reverse the disease, but:

The disorder results in jerky, involuntary movements known as chorea.

The drug tetrabenazine controls the chorea, which affects about 90 percent of people with the disease.

This strikes me as a legitimate use of government funding to equalize opportunity, in much the way that state education spending is designed to give students in property-poor counties the same chance at an education as those in property-rich counties. The state determines a per-pupil cost that represents reasonable education spending, and makes up the difference for those counties that can’t raise that much in property taxes.

The disease is still fatal. People who are diagnosed usually live about 20 years. Since it’s usually diagnosed in the late 40s or early 50s, that’s not such a bad deal. But ontrolling the corea means that sufferers might use more of that 20 years going out and interacting with other people instead of just shaking in a dark corner of the bedroom.

Like Woody Guthrie did. That’s why I paid attention to this story, because he suffered from Huntington’s. Huntington’s may be the second-most-famous minor disease, after Lou Gehrig’s disease, simply because of who had it. None of the stories I read mentioned Woody, though. Fame is fleeting, I guess.

If one parent had Huntington’s, your chance of getting it is 50 percent. If none did, your chance is zero. If they develop a test to let you know if’ you’re gonna get Huntington’s, would you take it? Well, they did, and Arlo Guthrie, whose music I came to like as much as Woody’s, said, “No thanks, I’ll just wait and see.” I’ve thought about that a lot. If I could know, would I want to — if my time were limited, just how limited? I’ve gone back and forth, but mostly I come down with Arlo — just let each day come, until the next one doesn’t.

Woody Guthrie was pretty much a Communist — “This Land Is Your Land” says it all– so he would find the angst over federal spending at the beginning of this entry pretty amusing. Hey, hey, Woody Gutrhie, I blogged you a post . . .

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4 Responses to “The chorean war”

  1. Nance Says:

    Testing for Huntington’s isn’t just about wanting to know vs. not wanting — if only it were that simple. First you have to know your health insurance plan inside and out, and be sure it’s absolutely ironclad that they can’t drop you for a positive result. Then you have to be pretty damn sure you’re never going to change jobs and/or insurers for the rest of your life, because the results of that test may indicate a pre-existing condition that will make you uninsurable by the vast majority of private plans. While I’m sure some take the philosophical approach of Arlo Guthrie, for others with a genetic predisposition, it’s more about strategizing.

  2. Leo Morris Says:

    Why couldn’t you just go out system and pay for the test yourself? Then it’s just between you and your doctor.

  3. Nance Says:

    I don’t think that’s possible, because I believe the “pre-existing condition” clause is based not only on what’s in your file, but on what you know about. If you conceal a positive test result and they find out about it, pfft goes the coverage.

  4. Harl Delos Says:

    I’ll give you an 88 for the headline, Leo.

    Most people reading only the headline would go “Huh?” instead of having any idea what the post is about, but it’s funny, it’s got a beat, and you can dance to it….


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