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HEALTH: Attorney general decries poor reporting of Lyme disease
The Ridgefield Press
June 4th, 2006
Two Ridgefielders were among the organizers of a Lyme disease rally Friday, June 2, in Hartford “to raise awareness of a public health crisis that affects tens of thousands of individuals throughout Connecticut and the nation.”
Jennifer Reid and Karen Gaudian of the Ridgefield Lyme Disease Task Force were both members of the organizing committee for the event that included groups from around the state, victims of the disease, and government officials. Attendees came from as far away as California, Oregon, Maine, and Florida.
Brooke Landau, a former Ridgefielder and a Lyme disease victim, was the emcee for the day. Ms. Landau is a reporter/producer for E! Entertainment and a featured reporter for ESPN who won an Emmy for a news segment on Lyme disease that aired on NBC’s Today show, The Discovery Channel, Fox News and EXTRA.
Among the speakers was Attorney General Richard Blumenthal who said, “We should be alarmed and astonished that our state is vastly underreporting the severity of our Lyme disease crisis. Very simply, the Department of Public Health is underreporting the incidence of the disease by huge, horrendous magnitudes. Our system is currently reporting only a fraction of the number of actual cases. It is a public health travesty and tragedy.”
Mr. Blumenthal said, “The reason for current underreporting is that the Department of Public Health eliminated laboratory reporting in 2003 due to supposed budgetary constraints. The number of reported cases declined from approximately 4,000 in 2003 to about 1,300 in 2004. For the last year of statistics in 2005, they increased by 34 percent to 1,810 cases.
“The 500-case increase is frightening, but it would have been much higher if an adequate reporting system for laboratories were in place. Currently, the only reporting is from physician offices.
Expanded physician training in tick-borne diseases, protection of Lyme physicians and increased research funding were some of the issues addressed by rally speakers.
A key concern affecting the Lyme disease community is that doctors disagree about appropriate treatment while patients are caught in the crossfire. These divided opinions, primarily where persistent Lyme disease is involved, have left many individuals suffering, organizers of the rally said.
“Lyme patients everywhere deserve the right to choose their standard of care for diagnosis and treatment,” said Ms. 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.”
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 from 1994-2003 nationally. Reported cases are estimated to be only 10% of actual cases that meet the CDC definition. Actual cases could be well over 16,686,800, Ms. Gaudian said.
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.
Proposed federal legislation sponsored by U.S. Sen. 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 (H.R. 3427 Chris Smith/Sue Kelly) authorizes an additional $20 million a year for Lyme disease research, education and prevention for the next five years.
For more information on Lyme disease and its issues, visit
www.lymediseaseassociation.org or www.timeforlyme.org.
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