Local Lyme Task Force:

Fix State Reporting Program

By John Voket

A representative from the Newtown Lyme Disease Task Force says the organization is joining with other state leaders who are calling for a complete overhaul of the current system for reporting on the often debilitating bacterial infection. Maggie Shaw, who is affected by the disease along with other family members, accused state health officials of contributing to the possible spread of the disease by maintaining reporting guidelines that give the appearance incidents of the illness is diminishing.

“By dropping mandatory lab reporting, they eliminate the most rudimentary aspect of public health, which is surveillance which provides people, leaders and towns with information that is needed to protect themselves,” Ms Shaw told The Newtown Bee recently. “In 2004, members of the Newtown Lyme Disease Task Force were part of a public Hearing on Lyme Disease; one of the main issues was to address concerns of the removal of mandatory lab reporting in January of 2003…”

At the hearing, Ms Shaw said DPH representatives stated electronic lab reporting would be implemented in the year 2005.

“We are still waiting and although they have stated many times that labs would be online, this has not been found to be true,” she said.

Until electronic surveillance is up and running, the local task force believes it is essential that the DPH reinstate mandatory lab reporting whether burdensome to them or not.

“Connecticut’s reported cases over three years from 2003 to 2005 totaled 4,561,” Ms Shaw pointed out. “That total number is lower than the total number of cases for the single year 2002, the last year lab reporting was mandatory — 4,631 cases. These numbers are grossly underreported to begin with.”

Physicians have a low compliance for reporting Lyme disease cases, and historically, labs report 80 percent while physicians report 20 percent, she said.

“Residents of Connecticut are at the epicenter of a significant health threat,” Ms Shaw said. “Tick-borne diseases are rapidly spreading throughout the state. By understating and underreporting, the state DPH is misleading the public, physicians, and media alike.”

Work on the computerized surveillance system began in 2005 and the state Public Health Department promised state Attorney General Richard Blumenthal that it would be online in the summer of 2006. The current projected completion date now is the end of this year. Mr Blumenthal has been pressing the agency since 2004 to compile more precise reports of Lyme disease.

“Awareness of Lyme disease helps people prevent it,” he said. “If people think that Lyme disease is going away because of underreporting it could give them a false sense of security.”

Kirby C. Stafford III, state entomologist, said Lyme disease “has always been underreported.”

“The number of cases is important to know for the true risk of the disease and its economic impact,” he said. “We need to know for research and policy.”

Connecticut’s top epidemiologist said the reporting system is designed to follow trends such as increases, declines and shifts, rather than to capture each single case.

“Epidemiologists have a tool box,” said Dr Matthew Cartter, epidemiology program coordinator in the state Department of Public Health. “The reportable disease system is a good tool for watching trends in common diseases.

“Underreporting has been going on for 20 years. For many diseases the reporting rate is about ten percent. We never think the numbers reported are the total number of cases of Lyme disease,” he added. “What we need to look at is an efficient, substantial method of recording Lyme disease cases.”

Connecticut reported 1,788 cases of Lyme disease in 2006.

The state is installing a Public Health Information Network, which will connect to the US Centers for Disease Control and Prevention. Another system, the Connecticut Electronic Disease Surveillance System, will feed information to state officials and the information network.

But by mid-May, the state Department of Information Technology was trying to make the systems work, the New Haven Register reported, citing Public Health Department documents.

Two private labs to be connected to the Public Health Information Network have outdated software and state information technology personnel received incorrect installation instructions for the Connecticut surveillance system.

Dr Cartter said linking the new systems to older computer systems in commercial labs is a “considerable information technology challenge.”

Officials hope to have a large clinical lab online by the end of the year, he said.

A doctor now reporting a case of Lyme disease must complete and submit a paper form, including laboratory results, if available. The state contacts and questions the doctor and the lab.

Between 1998 and 2002 the state health department required laboratory results with Lyme disease reports, partly to clarify the efficacy of a Lyme disease vaccine. The vaccine was pulled from the market in 2002 and the system reverted to a doctor-reported system.

The Associated Press contributed to this story.