the politics of lyme disease

Sara Robinson of Orcinus has an exceptional essay on Lyme disease and the politics of restricting treatment, apropos of a recent shooting at a Baptist church in Illinois. It's a lengthy article, well worth reading in full. Here's an excerpt:

The shooter, Terry Sedlacek, had struggled for years with long-term, chronic Lyme disease, contracted after being bitten by a tick some years ago. Though this description of his symptoms seems extreme even among Lyme patients, his struggle to get treatment is an infuriatingly common one. The media debate over the role this disease may have played in the shooting has tapped into one of the most furious and tragic medical debates in modern medicine. On one hand: there are doctors on TV claiming that it's entirely possible that Lyme can create the kind of psychiatric problems that would lead to this kind of catastrophe. On the other are doctors saying that it's impossible -- Lyme is a relatively benign bacterial infection that's easily treated with a few weeks of antibiotics.

Infectious disease specialists-- represented by the Infectious Disease Society of American (ISDA) -- have for decades held to the firm position that Lyme is a spirochete that can be killed with a 28-day course of doxycycline. If you're still sick when the month is over, whatever you have isn't Lyme (and, in practice, is generally assumed to be psychosomatic). And this is true, as far as it goes: if you're lucky enough to catch the disease in the first few months after you're bit -- or you've got one of the many strains that's amenable to this treatment -- a short course of doxy usually does do the trick.


However, once some strains of Lyme get dispersed and embedded in the body's tissues, the standard treatment won't touch them. Worse: the standard Lyme tests won't, either, so the results will likely come back negative. The shady politics of how the approved Lyme tests were developed would take a whole separate post to explain; but suffice to say that they're only 70% accurate on their best day, which would make them patently unacceptable as a diagnostic tool were it any other disease. Far more accurate and sensitive tests are available, but insurance companies won't cover the $400 fee.

That's because the IDSA panel doesn't approve of these tests (even though the "controversial" proteins it tests for -- the only ones common to all Lyme strains -- are the same proteins some of these same doctors once tried to build a Lyme vaccine on). It also doesn't accept Lyme's shapeshifting nature; the existence of a chronic form of resistant Lyme that requires long-term treatment; the importance of seeking out and treating co-infections; or the neurological and cognitive issues it can cause. All of these facts are well-documented by the peer-reviewed science; but IDSA's Lyme panel has actually purged new members who brought these studies up for consideration.

All this is part of the background for the dueling doctor interviews we're seeing on TV this week.

The Great Divide
Why would ostensibly caring doctors be so resistant to accepting new and better data? As always, follow the money. The IDSA's minimalist view of Lyme is greatly favored by insurance companies, who really don't want to be on the hook for expensive testing or more than a month of treatment. On a broader note: they're absolutely terrified (with good reason) that Lyme could turn out to be another huge budget-busting epidemic like AIDS, and want to do everything they can to make sure they're not stuck with the bills for it. To that end, they've made sure that the ISDA's Lyme experts have been richly rewarded with grants, consulting fees, and so on for aggressively defending the narrowest possible case definition and the most limited treatment standards. For their part, IDSA's Lyme group has held up their end of the deal so reliably that last May, they became the first medical standards board in the history of American medicine to be successfully sued (by the attorney general of Connecticut, no less) for corruption.

I don't normally make a habit of quoting so extensively, but I want to encourage you to go read her essay in its entirety, here.

Cross-posted at Dead Horse.