TOUCHED BY LYME: Only 55 Lyme cases in California? Really?

More facts about the number 55: As a support group leader and Lyme activist, I myself probably talked to more than 55 new Lyme patients in 2009. The CaliforniaLyme Yahoo support group grew by a heck of a lot more than 55 members in 2009 (we have about 1100 members in all.) And I’d bet the bank that California’s handful of Lyme-literate MDs took on many more than 55 new patients in 2009.

So why the crummy statistic?

Here’s the short version: It’s hard to get properly tested for Lyme disease in California in the first place. Even patients who show up with a tick bite and a bulls-eye rash are often told by their doctors “no cause for concern, because there’s no Lyme around here.”

The relative few who get tested are typically given an ELISA (known to miss as many cases of Lyme as it finds.) Those who DO get a positive ELISA may then get a western blot test.

Now, get this. Because Lyme is a “lab reportable disease,” the lab, by law, must notify the public health department of the patient’s county of residence. County health officials are then supposed to follow up, passing along “true” cases of Lyme to state officials.

The state takes the cases reported by the counties, throws out any that don’t meet the CDC’s highly restrictive surveillance definition, and–voila—there’s your tally of California Lyme cases.

This scenario offers many possible points of system failure. Here’s one: if overworked and underpaid county employees just don’t quite make it that far down in their in-baskets, the process comes to a screeching halt. The “reportable” information falls into a black hole, never to be heard from again.

In 2007, one lab found 1137 positive Lyme tests for California residents, and duly reported the cases to their respective counties. But, by the time the reporting meat grinder finished churning, those 1137 had been whittled down to 107. That leaves more than a thousand people who were sick enough to prompt a doctor to test for Lyme—and tested POSITIVE, for Pete’s sake—that just disappeared from the official books.

Even though Lyme is by law “lab reportable,” the state does NOT collect information directly from the labs. The labs send it to the counties. Period. State officials keep no count of how many positive Lyme cases the labs have found.

I find this hard to believe. I mean, when the labs are emailing the results to the counties, why can’t they just c.c. it to the state at the same time? How hard would it be to keep a list of how many Californians test positive for Lyme?

After today’s meeting, I called the state health department to clarify that point. A spokeswoman confirmed that the state does not collect this information. If the counties drop the ball, that’s the end of it. Finito.

Isn’t that absurd?

Dorothy Kupcha Leland can be reached at dleland@lymedisease.org.

See her previous post about LDAC here.