It was big news this week when the CDC announced that cases of Lyme disease were vastly underreported and that, in fact, about 300,000 Americans are diagnosed with the disease each year — 10 times its previous estimate. Lyme disease now has this distinction according to the public health authorities: It's the most commonly reported tick-borne illness in the United States.
In the latest NEJM Journal Watch's HIV and ID Observations blog post, Dr. Paul Sax, clinical director of the HIV Program and Division of Infectious Diseases at Brigham and Women’s Hospital and professor of medicine at Harvard Medical School, writes that he's not at all surprised by the Lyme disease underreporting and offers a few theories on what's behind it:
Go ahead, check my math — that’s a whopping 10:1 ratio of actual to reported patients with Lyme, highlighting that this reporting is something we clinicians just don’t do very well.
And it’s no surprise to me at all.
--Clinicians are busy doing other stuff, most importantly taking care of their patients.
Lyme is one of many reportable diseases — take a look at this list!
--It’s annoying. If you asked 100 doctors and nurses what they like least about practicing medicine, 74.39% would say “the paperwork.”
--The forms can’t be completed quickly, as they request detailed information about dates of exposure and onset of illness, presence of diverse associated symptoms, and evaluations for ancillary diseases. Plus, they’re paper forms — a particular problem in an increasingly web-based and electronic medical record world. As for the specific dates of possible exposure and onset of symptoms? “I just lie,” one PCP told me.
--“Soft calls” won’t get reported at all. Think about the febrile, achy patient in the summer who’s just spent a weekend hiking in the woods, saying ticks were everywhere, then gets treated (appropriately) for suspected Lyme. That may be the billing code the clinician uses, but often as not, no Lyme test is sent.
--No one’s paying for these reports. Forgive the mercenary tone to the comment, but as these folks will tell you, humans are very predictable creatures — give them some incentive to do something, and they’ll often do it, even if the task is unpleasant.
Sax suggests that those seeking a fix for the underreporting problem might benefit from looking at the history of HIV,
a disease, he says "with extremely accurate surveillance."
HIV reporting is tied to receipt of government funds for HIV treatment and prevention. That’s a huge incentive to get the numbers right. If anything, some sites are known to overreport their cases, which is why name-based reporting is such an important accuracy check on the data.
In other words, money talks. Lyme activists, take note.
This program aired on August 22, 2013. The audio for this program is not available.