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State lawmakers propose Lyme disease task force
Robert Miller
The News Times
Connecticut
January 28, 2007
In 2002, the state of Connecticut recorded more than 4,631 cases of Lyme disease. In 2003, that number dropped to 1,403. By 2005, it was up to 1,810 -- still less than half the 2002 levels.
The lower numbers don't mean black-footed ticks in the state are fewer or less prone to spread Lyme disease.
They mean the state decided to stop counting cases of Lyme disease reported through laboratory tests -- about half the Lyme reports it received. Instead, it only counted cases confirmed in doctors' offices.
"We were No. 1 in Lyme disease in the United States in 2002,'' said state Rep. Jason Bartlett, D-Bethel. "Now we're No. 5.''
On Monday at 11:30 a.m., Bartlett and state Rep. William Tong, D-Stamford, will hold a meeting at the State Legislative Office Building in Hartford to announce two new bills on Lyme disease.
The first will require the state to again add laboratory test results to its Lyme disease tally. The second will create a permanent state Lyme Disease Task Force.
For Maggie Shaw, a member of the Newtown Lyme Disease Task Force, both acts are long overdue. She said when Dr. J. Robert Galvin, the state Commissioner of Public Health, held a conference on Lyme disease in 2004, he promised more state involvement in treating the disease.
"Since then, we can't get even get through to the commissioner's office,'' Shaw said Wednesday.
Bartlett, a freshman state representative, said he learned about the problems of Lyme disease from his mother, Pat, who leads the Bethel Lyme Disease Task Force.
He's also met with Shaw and others to hear their concerns. Those discussions led to the bills he and Tong are introducing Monday.
"I think we really need to get a handle on the number of cases we have in the state,'' he said. "I don't believe they're declining. I think we have a Lyme disease epidemic in Fairfield County and the rest of the state.''
Lyme disease advocates said inaccurate counts mean the state will be eligible for less federal money to treat the disease. More importantly, they said, it may convince people Lyme disease isn't that large a problem in the state.
State Attorney General Richard Blumenthal has also been pushing this issue. In a series of letters to Galvin dating back to July 2006, Blumenthal has insisted that it's the Department of Public Health's responsibility to get the fullest, most accurate count of Lyme disease cases in the state.
"The under-reporting of this disease is particularly harmful for the public health,'' Blumenthal said in one letter. "If the public is wrongly led to believe that the incidence of the disease is declining, they will be less diligent in their preventive efforts.''
"When we tell people, they're shocked that nothing is being done in the state,'' said Jennifer Reid, a member of the Ridgefield Lyme Disease Task Force.
Dr. Matthew Cartter, an epidemiologist with the state Public Health Department, said the state only counted lab results for a few years, as part of a special program funded by the federal Centers for Disease Control and Prevention, to study the effect of the Lyme disease vaccine.
When the vaccine was pulled off the market, Cartter said, that funding was shifted to other programs and the state stopped the laboratory counting.
But Cartter said the health department has never downplayed Lyme disease.
"We've always said we have one of the highest rates of Lyme disease in the world,'' he said.
Cartter also said the public health department is now implementing an electronic reporting system from laboratories, and that Lyme disease has been added to the list of reportable diseases for that system.
But the system will only begin collecting data by mid-summer. It won't be until 2009 that all state laboratories hook up to the system, he said.
"We're not talking about hundreds or even thousands of reports here,'' he said. "It's a huge number.''
No matter how it's counted, Lyme disease is the leading tick-borne illness in the United States. It's caused by a bacterial spirochete, Borrelia burgdorferi, that's spread by the black-footed tick -- the deer tick -- from wildlife to humans. According to the federal Centers of Disease Control and Prevention, Connecticut had 1,810 cases of Lyme disease in 2005, the fifth-highest number in the country.
But on a per capita basis, Connecticut is the second-leading state in the country, with 51.6 cases per every 100,000 people. Delaware is first, with 76.6 cases per 100,000 people. And by all reckoning, the number of Lyme cases in the United States is drastically underreported -- by as much as a factor of 10.
Once infected, humans can have flu-like symptoms -- high fever, headache, aching bones. Sometimes, but not always, there is a spreading red rash around the tick bite.
If treated promptly with antibiotics, the great majority of people recover quickly from the infection, without consequences. But the people who don't seek treatment, or for a few that do, Lyme disease can cause a dizzying assortment of maladies -- arthritic joints, heart problems, chronic fatigue, memory loss and neurological problems.
Shaw and Reid said it has been volunteers in local Lyme disease groups who have spread the message about the disease.
There are now only two state-sponsored Lyme disease prevention programs funded by the CDC in Connecticut's 82 health districts -- one in the Torrington area, the second in the state's southeast corner.
"That's important work," Reid of Ridgefield said. "But there's really nothing being done for the rest of us."
The State Task Force would bring together the expertise of the state departments of Public Health and Environment, the Connecticut Agricultural Experiment Station, physicians and local advocates.
Although there's a debate in the medical community about how Lyme disease should be treated, and whether chronic Lyme disease exists, Shaw said she hoped all voices in the debate could be included on the task force.
"We need to coordinate our efforts,'' she said. "Because there are so many great groups in the state, we'd like all the different people to be involved.''
• Contact Robert Miller at bmiller@newstimes.com or (203) 731-3345.
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© 2006 The National Lyme Disease Memorial Park Project
