Lyme Rights Rally Is National Call To Action

Newtown Task Force Will Be Represented At Capital Event

HARTFORD — Lyme disease patients and their families, as well as advocates and government officials, will rally at the State Capitol on Friday, June 2, from noon to 3 pm, to raise awareness of a public health crisis that affects tens of thousands of individuals throughout Connecticut and the nation.

Newtown Lyme Disease Task Force (NLDTF) representatives will stand beside Attorney General Richard Blumenthal, State Representative Claudia Powers, and E! Entertainment reporter and Lyme disease patient Brooke Landau. In addition, Lyme disease expert Dr Joseph Burrascano, social worker Sandy Berenbaum, Lyme Disease Association President Pat Smith and Dr Charles Ray Jones are scheduled to be attending.

 Cases of Lyme disease in Connecticut – the state where the disease was first discovered – increased 34 percent last year. The Connecticut State Department of Public Health said there were 1,810 new cases of Lyme disease reported in 2005, an increase from 1,348 the previous year.

The 2005 incidence rate in Connecticut was 53 cases per 100,000 people.

Lyme disease is reported in 49 states, with data from the Centers for Disease Control and Prevention showing 166,868 reported cases of Lyme disease nationally from 1994 to 2003. Reported cases are estimated to be approximately ten percent of actual cases that meet the CDC definition.

 “Outrage is growing because the incidence of tick-borne diseases is rising at an alarming rate, while the medical community is not keeping pace,” stated rally committee member and Newtown Task Force Chair Maggie Shaw. “Thirty years have passed since Lyme disease was identified and we still have no accurate testing, no comprehensive physician training, and no adequate research on chronic Lyme disease.”

Ms Shaw said patients who contact her at the Newtown Lyme Disease Task Force often describe enduring months of misdiagnosis and suffering before finding relief from one of the few Lyme literate physicians practicing.

One of the key concerns affecting the Lyme disease community is that doctors disagree about appropriate treatment while patients are caught in the crossfire. These deeply divided opinions, primarily where persistent Lyme disease is involved, have left many individuals suffering. Expanded physician training in tick-borne diseases, protection of Lyme physicians, and increased research funding are just a few of the many issues that will be addressed by rally speakers, along with patient testimonials from both adults and children.

Children are in the highest risk category for contracting the disease, since people are commonly infected in their own backyard. The effects on students can be staggering: a Centers for Disease Control and Prevention study reported median school absences of 140 days in New Jersey, and a Columbia University Medical Center study reported a 22-point drop in IQ.

“Lyme patients everywhere deserve the right to choose their standard of care for diagnosis and treatment,” said Jennifer Reid, co-chair of the Ridgefield Lyme Disease Task Force. “Physicians who are willing to address the complexities of Lyme disease, along with co-infections, should be allowed to practice freely without fear of repercussions.”

Proposed federal legislation sponsored by US Senator Christopher Dodd (D-CT) aims to improve prevention efforts and access to medical care for Lyme patients. The Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2005 in the Senate (S 1479 Chris Dodd/Rick Santorum), and its House companion bill (HR 3427 Chris Smith/Sue Kelly) authorizes an additional $20 million a year for Lyme disease research, education, and prevention for the next five years.

Kirby Stafford, chief entomologist and vice director of the Connecticut Agricultural Experiment Station, a state-supported research institution based in New Haven, said weather conditions influence the populations of animals ticks feed on, which in turn affects how many ticks get blood meals.

Dr Stafford spoke at a recent Lyme Disease workshop that was sponsored by the Newtown Health District, Kevin’s Community Center, and the Board of Education.

“The gross number is kind of tied with the deer population, because the number of deer is one of the main determinants of what the overall number of ticks is,” Dr Stafford said.

For additional rally information and directions visit LymeRightsRally.org.