Preliminary data released by the Virginia Department of Health for 2011 ranks Rappahannock County as having the fourth highest incidence in the state of confirmed Lyme disease cases among its citizens.
That translates only to four confirmed cases in 2011, but the U.S. Centers for Disease Control and Prevention (CDC) just last month acknowledged widespread underreporting of Lyme by at least tenfold over past figures.
Click here for a first person account of author Megan Smith’s struggle to get the correct diagnosis of what she’s positive is Lyme disease.
Rappahannock County’s four cases, with its 2011 population of 7,373, translated into an occurrence rate of 54.3 per 100,000 people. Clarke County had the highest rate in the state, with 17 cases translating to a rate of 121.1. Neighboring Warren County had 26 cases for a rate of 69.2.
Rappahannock’s rate was more than four times the state average. In 2011, Virginia had 1,023 Lyme cases for an incidence rate of 12.8 per 100,000.
Virginia’s Northwest Health Planning Region, which includes Rappahannock County, had 345 Lyme cases, equating to a rate of 27.9 — about half the rate of the county. While the North Region had more confirmed cases totaling 468, its rate was lower at 21 per 100,000 people.
When asked what it means that Rappahannock County only reported four Lyme cases in 2011 and the CDC is now contending this figure could be 10 times that, Dr. David Gaines, state public health entomologist and chief tick tracker, said: “It probably means that Rappahannock is a highly [Lyme] endemic county.”
Barbara Downes, Rappahannock-Rapidan Health District epidemiologist, confirmed that Rappahannock’s figures continue to rise, recently deeming it a “red” county for Lyme disease, indicating one of the highest incidences in Virginia.
These figures are obtained through “confirmed” Lyme cases, she said, versus “suspect,” or “probable,” as defined using the National Lyme Disease Surveillance Case Definition approved by the CDC.
On Aug. 18, the CDC acknowledged its past statistics for U.S. Lyme disease occurrence are extremely low due to underreporting of surveillance figures by doctors and clinical laboratories.
At the 2013 International Conference on Lyme Borreliosis and Other Tick-Borne Diseases in Boston, the CDC presented preliminary new findings and raised older figures of approximately 30,000 reported Lyme cases per year to a more likely figure of 300,000 — a tenfold increase and one they admit is probably still low.
Most Lyme disease cases, caused by the tick-borne bacterium Borrelia burgdorferi and reported to the CDC using state-by-state surveillance, are concentrated heavily in the Northeast and upper Midwest of the U.S., the CDC said, with 96 percent of cases in 13 states, including Virginia.
“We know that routine surveillance only gives us part of the picture, and that the true number of illnesses is much greater,” said Paul Mead, chief of epidemiology and surveillance for CDC’s Lyme disease program. “This new preliminary estimate confirms that Lyme disease is a tremendous public health problem in the United States, and clearly highlights the urgent need for prevention.”
In a press release, the CDC said it will continue to analyze the data in three studies (a survey of clinical laboratories, another self-reported by the general public and a review of medical claims) and will publish its finalized estimates when the studies are complete to “better understand the overall burden of Lyme disease in the United States.”
CBS News, reporting from the event, said in a strong statement on its website, “For many years, CDC officials have known that many doctors don’t report every case and the true count was probably much higher.”
Commenters on the website were mostly unkind to the CDC, which has been under fire by Lyme advocates for a seemingly indifferent attitude toward Lyme and lack of transparency by its closely linked Infectious Disease Society of America (IDSA) — the organization which created the very controversial and stringent diagnostic guidelines for physicians which have left many Lyme disease patients undiagnosed and untreated.
In the July 1 issue of The New Yorker, an article called “The Lyme Wars,” stated that, “most researchers agree that the true number of infections is five to ten times higher.” The author, Michael Specter, after hearing CDC’s announcement some six weeks later, pointed out that these recent estimates only include “those who have been diagnosed with the disease.”
As early as 1998, the New England Journal of Medicine found that underreporting existed in the Northeast due to “considerable underreporting in the current passive surveillance system.”
Yet the CDC has seemingly only made it more difficult to get an accurate illness rate due to its stringent reporting guidelines.
The Rappahannock News was the first to report low surveillance figures in Virginia in April 2007 when local doctors were only reporting a fraction of their confirmed cases to the Virginia Health Department.
When asked why he wasn’t reporting figures at all at that time, Dr. Jerry Martin replied, “What good would it do?” When asked this week if the office would share the doctor’s recent figures reported to the health department, a spokesperson replied: “No, we cannot.”
A spokesperson for Dr. John McCue said last week that the medical office “no longer keeps” the Lyme patient case totals after they’re turned in to the health department annually. In 2007, however, McCue’s office told the paper he had confirmed 23 Lyme cases through blood tests during 2006 and into the spring of 2007 — though only two showed up in official health department totals for 2006.
New Yorker writer Specter pointed out why reporting figures matter: “Underreporting . . . obscures the true burden of the illnesses, on individuals as well as on health-care systems. It also makes it harder to convince Congress to fund research. These numbers ought to scare people,” he concluded, “even in Washington.”
The ongoing predicament of Lyme’s growing prevalence in the U.S., punctuated by these more realistic figures, is summed up by CDC’s Meade himself: “It’s giving us a fuller picture and it’s not a pleasing one.”