DECEMBER 2008
CONNECTICUT POST
Cases climb but labs no longer
required to report Lyme disease
HARTFORD - At a time when Connecticut is seeing record numbers of
Lyme disease cases, the state will no longer require laboratories to report
the tick-borne disease.
This means once a lab informs a physician of its test results, the lab has fulfilled its mission. Epidemiologists, physicians, researchers and even the public's knowledge about the extent and severity of Lyme disease in Connecticut may be compromised.
"Letting go of this obligation to report Lyme cases will make reporting minimal, if at all, and skew the entire perception of a disease that is underreported as it is," said Dr. Amiram Katz, a neurologist in Fairfield who specializes in treating late-stage cases of Lyme disease.
The patients Katz treats have already lost cognitive abilities and have psychiatric disorders associated with advanced forms of the tick-borne disease.
"It's very bizarre the [state Department of] Public Health doing this," Katz says. "I can't understand the rationale behind it. And I'm afraid that political issues have overtaken public policy and influenced decision-making here."
But that's not how the state views the changes. Dr. Matthew Cartter, epidemiology program coordinator for the state Department of Public Health, says the agency's decision was motivated by a "shift in priorities" and not the state's budget woes.
In fact, the state now has about $500,000, twice as much federal funding as it had last year for its mandated laboratory surveillance.
"For those of us in the field, says Cartter, "it's nice to move our focus from the counting of cases to the prevention of Lyme."
The disease, Cartter said, was only made a laboratory reportable one as part of a joint study with the federal Centers for Disease Control and Prevention that looked at the impact of a Lyme disease vaccine on clinical cases. The vaccine manufacturer pulled the vaccine off the market last year, claiming it was not profitable enough.
By the end of that three-year study, the CDC's emphasis had shifted, according to Cartter, from case surveillance to disease prevention and intervention. Connecticut logged 4,631 cases of Lyme disease last year
up from 3,597, a 29 percent jump, according to statistics just released by the Connecticut Agricultural Experiment Station in New Haven.
"Now that they've dropped the required lab surveillance, the number of Lyme cases may drop substantially," said Kirby Stafford, chief scientist for the ag station's forestry and horticulture department. Stafford suggests that physicians might still continue to report confirmed cases to state public health officials.
Stafford believes that even without the laboratory data, the state may still have a sense of Lyme disease prevalence through active surveillance programs operated by the Westport/Weston Health District, and the Ledge Light Health District in Groton, which includes Lyme and Old Lyme. All of those affected communities, considered endemic areas for Lyme transmission, have CDC funding.
Judging by Connecticut's experience in 1992, before local health districts formed voluntary and active surveillance programs, only 7 percent of state physicians notified state public health officials of confirmed Lyme cases.
Diane Blanchard, a Lyme disease funding supporter from Greenwich, who suffered from the disease for about a decade before she was diagnosed and treated, calls the state's action the latest slap in the face to those who deal with recurring symptoms of the tick-borne disease.
"There is simply not enough research being done. We don't have an accurate-enough test that can clearly point to when you have the disease and when you're cured," Blanchard said, adding that grants that determine which programs to support based on disease prevalence may conclude that Lyme is no longer endemic in Connecticut.
"From a practical standpoint, this move by the state is ill-advised and ill-conceived," said Blanchard, who is co-president of the Greenwich Lyme Disease Task Force. "At a time when we need to track how extensive this disease is in Connecticut to ensure research funding, they are undermining that effort."
Lyme disease support groups and foundations recognize the tight economic realities the state faces, Blanchard said. "But we are taking funding from a disease that is in our back yard to support other diseases, such as West Nile and smallpox, that probably don't cause the threat this one does."
Meanwhile, Chris Malinowski, a spokesman for the Lyme Disease Foundation in Hartford, a national organization that tracks the prevalence of the disease, said his organization intends to protest the state's move and educate lawmakers and the public about how misguided it is.
"The ticks have had all winter to hunker down in the snow. And they're coming out now in droves," Malinowski said. "Already we're seeing a steady stream of calls from people who have been bitten. And what we think is going to happen is that doctors will be less anxious to test for Lyme. Therefore, the people who do get diagnosed will be diagnosed a lot later and face more severe symptoms."
An economic impact study on Lyme that appeared in Contingencies, an actuarial trade publication, indicated that the average treatment and diagnosis and lost wages related to the disease was $61,688 per year, per patient.
Over the last decade, Connecticut has looked into a variety of ways of studying the prevalence of Lyme disease, notes CDC epidemiologist Paul Mead. At the same time, he acknowledges that other states, such as New York are looking into "the efficacy of using laboratories as mandatory reporters."