Lyme Disease Coalition Promotes Action

 In Fight Against Lyme Epidemic

 NEW BRITAIN — The Connecticut Lyme Disease Coalition (CLDC), an alliance of 11 patient advocacy groups from across the State, including the Newtown Lyme Disease Task Force, this week announced it has identified four primary action areas based on a recent hearing before Attorney General Richard Blumenthal and Public Health Commissioner Robert Galvin, MD on issues related to Lyme disease.

 The group, which was formed to increase public awareness of Lyme disease-related issues and to help advocate for solutions to the Lyme disease epidemic in the region, said that, based on testimony at the day-long session, it will focus on initiatives to: Create the first state budget line item specifically directed toward funding for lab reporting and increased state-wide prevention programs; Educate health care providers on the difference between CDC surveillance criteria vs. diagnostic criteria; and Re-instate laboratory reporting of Lyme Disease in Connecticut.

The CLDC, which came together to bring a unified voice to the hearings, also hopes to be considered as a statewide task force working in tandem with health officials to expand the state’s Lyme disease prevention activities and create an effective Lyme program.

The January hearing, which attracted overflow attendance, brought together three separate panels, one comprised of Lyme disease patients, another of physicians and researchers, and a third of government and public health officials. Each panel addressed the problems and controversies of diagnosing, treating, and preventing Lyme disease from its particular perspective.

 Representatives of the Centers for Disease Control and the National Institutes of Health participated, discussing how Lyme disease is being addressed at the national level and how that can impact funding and reporting requirements at the state level.

“We applaud Attorney General Blumenthal and Commissioner Galvin for creating the opportunity to hear from such a broad and diverse group of advocates in the fight against Lyme disease,” said Chris Montes, CLDC spokesperson.

CLDC representatives said that they were surprised to learn that all funding to date of Lyme disease surveillance, reporting, and prevention efforts in Connecticut has come from federal programs overseen by the CDC and NIH, and that no funding has come from the state budget. While Connecticut, as one of the most affected states in the nation, has successfully competed for and received a considerable number of federal Lyme disease grants, federal budgets are lower than in the past and Connecticut may not be able to rely on federal funding in the future. This reality will require Connecticut to assume responsibility for some funding for Lyme disease initiatives; an effort that the CLDC said it will work to bring to the attention of state lawmakers charged with developing the budget.

In addition, CDC representative Paul Meade reported that the CDC surveillance criteria should not be used by physicians as diagnostic criteria. The improper use of surveillance criteria by physicians has caused many individuals to remain undiagnosed and untreated according to the CLDC.

Lyme disease is known among physicians who specialize in its diagnosis and treatment for “hiding” for periods of time and for mimicking numerous other illnesses, making diagnosis particularly difficult, according to the CLDC. These characteristics underscore the need to disseminate the information to the physician community, an effort the CLDC will champion.

Representatives of the Connecticut Department of Public Health, the NIH and CDC told the hearing that, in recent years, their focus has been changing from tracking the spread and growth of the Lyme disease epidemic through surveillance and reporting, to prevention strategies. This focus change and budget issues, according to the Connecticut Department of Public Health representative, contributed to the Department’s decision to discontinue mandatory laboratory reporting of Lyme disease.

The consensus of the panels was that the dropping of laboratory reporting will lead to an artificial drop in the number of Lyme disease cases reported, since the labs have been reporting approximately 80 percent of cases. Because of Connecticut’s status as the state with the highest per capita rate of infection from Lyme disease, under-reporting here can skew statistics nationwide. Though the CDC representative stated that surveillance numbers do not equate with funding levels, Attorney General Blumenthal stated forcefully that if we do not continue to report cases of Lyme disease, we have no way of knowing whether or not prevention efforts are successful or if progress is being made against Lyme disease.

Commissioner Galvin commented that the state is planning to re-instate laboratory reporting when improvements to the state’s information technology capabilities will allow for more efficient electronic reporting by labs. In addition, DPH will encourage physician and healthcare providers to report cases of Lyme disease to the department. The system for electronic laboratory reporting which would be used to collect infectious disease data including Lyme disease case numbers will begin implementation in 2005. The CLDC will continue its efforts to advocate for restoring lab reporting as early as possible and will work within the Lyme disease, public health, and government communities toward that end.

The Connecticut Lyme Disease Coalition (CLDC) includes the following groups: City of New Britain Commission on Persons with Disabilities; Committee for Education Reform for Children with Lyme Disease (CERCLD); Greater Hartford Lyme Disease Support and Action Group; Lyme Disease Association, Inc; Middlesex County Lyme Disease Task Force; Newtown Lyme Disease Task Force; Tick-Related Illnesses Self-Help Alliance (TRISHA); Time for Lyme, Inc; Ridgefield Lyme Disease Task Force; Wilton Lyme Disease Support Groups; and the Woodbridge Lyme Disease Support and Action Group.

Members of the Newtown Lyme Disease Task Force and officials from the town and the Newtown Health District also attended the January hearing.