I delivered these comments at the Tick-Borne Diseases & Associated Illnesses: National Community Engagement Initiative public meeting in San Francisco on June 11.

I’m Dorothy Leland, President of LymeDisease.org. I live in Davis, California.

Nineteen years ago, my daughter became mysteriously ill and doctors said it couldn’t possibly be Lyme disease—because there was no Lyme disease in California. In fact, she did have Lyme. But, like many Californians, it took her a frustratingly long time to get properly diagnosed.

Now, two decades later, the situation hasn’t really changed. The official way of counting Lyme cases puts California (and 35 other states) at a severe disadvantage. These states are deemed “low incidence” for Lyme and they must work harder to document each Lyme case.

In 2022, a rule change made it easier for high-incidence states to report Lyme cases—and no surprise, their numbers went up. But with no such simplification for “low incidence” states, California continues to report fewer than 100 cases a year.

Alas, it seems to be a self-fulfilling prophecy: CDC maps and charts reinforce the idea that Lyme isn’t a problem in California, doctors too often don’t even consider tick-borne disease in their differential diagnoses, and Lyme-infected people are left in a limbo of ill health—either undiagnosed or misdiagnosed.

But here’s the rub: California is a huge, ecologically diverse state, but the reporting system lumps it all together.

For example, Mendocino County has historically had a high rate of Lyme-infected ticks and is bigger than Rhode Island and Delaware combined—two high-incidence states. Yet, cases there must meet “low incidence” standards.

Various metrics suggest that California has long undercounted Lyme cases. In 2016, for instance, the Fair Health insurance database recorded more than 46,000 Lyme-related insurance claims in California —putting it in the top five states for Lyme claims. Our official case count that year? Ninety.

In another example, California canine cases have long vastly outnumbered reported human cases. In 2022, the Companion Animal Parasite Council found some 2600 cases of canine Lyme disease in the state—compared to 61 human cases.

(Since dogs and their humans tend to hang out together in the same environments, that discrepancy seems dubious.)

Finally, statistics from the MyLymeData patient registry also suggest systemic under-reporting by the CDC—not only in California, but throughout the south and west.

Why this insistence on “high incidence” and “low incidence” criteria? Lyme-infected people in 36 states are ill-served by it. We need a better system. Now.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of Finding Resilience: A Teen’s Journey Through Lyme Disease and of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.