Our Role & Impact

Legislative Activities

Founded in and serving the Washington, DC area since 2001, NatCapLyme educates government officials and healthcare industry leaders about Lyme and tick-borne diseases on behalf of individuals and families of those afflicted with such diseases. We actively engage with all sides of the Lyme and tick-borne disease issue to encourage measurable progress. NatCapLyme is an all-volunteer organization, but we have an appointed legal and legislative counsel, as well as individual board members, who bring political and legal experience to the table. Our legislative activities are ongoing, always focused on improving the lives of tick-borne disease sufferers.

Legislative-activities

We’re fighting on many fronts. We invite you to see what we’re doing on a state and federal level:

Letter to MD Health Committee on HB 836

April 5, 2007

Honorable Joan Carter Conway
Miller Senate Office Building, 2 West Wing
11 Bladen St., Annapolis, MD 21401

Dear Senator Conway,

I represent the National Capital Lyme Disease Association (NCLDA). We are a 501(c)(3) non-profit association that represents patients from Maryland, Virginia and the District of Columbia. We are very active in the areas of patient support, community education services, and research development for this disease. We were on the Lyme Disease Subcommittee of the DHMH Vector-Borne Disease Working Group last year to help develop a State Strategic Plan for LD control and prevention. Many of our members come from the Maryland suburbs of Washington DC including Montgomery County. We are not affiliated with any other national group including the Lyme Disease Association. We have been very active in the past year in Montgomery County trying to educate legislators on the issue of Lyme Disease and were both surprised and pleased to see a Lyme Disease bill introduced in the House by Delegate Karen Montgomery. Unfortunately, even through bill HR 836 offers funding for LD control and prevention, it is flawed by including the “Latest Consensus Guidelines for diagnosis and treatment” in its text. Our association cannot support House Bill 836 for that reason. Supporters of the bill have said that the verbiage is generic in meaning. We believe this to be either naïve or misleading. Many of those advocating the bill believe this language leads directly to an endorsement of one of two popular Lyme disease protocols, the Guidelines of the Infectious Disease Society of America (IDSA). If indeed, it is not intended to create that implication, the language should be changed or, at the very least, it should be clarified in a floor statement or committee report. Our organization has had three attorneys knowledgeable in the controversy and the IDSA guidelines, as well as the Guidelines of the ILADS examine the language in the bill and they all believe that a tacit endorsement of the IDSA guidelines will result.

NCLDA supported an amendment to this bill in the House that asked to “develop and disseminate balanced educational materials to health care providers including the National Guideline Clearinghouse peer-reviewed guidelines for the diagnosis and treatment of early and chronic Lyme disease.”

We note in support of this amendment that the state of science in support of medicine as to Lyme and other tick-borne illnesses is at an unprecedented stage of rapid development. A simple search of the PUBMED website at the National Library of Medicine at the National Institutes of Health reveals 7,787 articles. Nearly 1000 of those articles were released in 2006 alone, and the sum of the research only begins to illuminate the depths of this illness, its causative agent(s) and potential treatment. Particularly telling is the recent research by the Centers for Disease Control and others revealing the ability of the Lyme spirochete to invade neural cells and other recent studies showing that the spirochete employs a variety of mechanisms to evade immune response. Given that the science and medicine surrounding tick-borne illness is still developing, those in government charged to provide guidance to others respecting the prevention, diagnosis and treatment of these illnesses should be open minded, expansive and inclusive. Despite its seeming innocuous language, to a learned student of the research, it is not. The amendment that we supported would have made it so, but it was not included in the bill that passed the House and is presently in the Senate. A bill that favors a particular guideline, when there are several, peer reviewed and accepted, would not be in the best interest of the public.

While we fully understand that no one bill can satisfy everyone’s interests and needs we ask you to please listen to the voices of your constituents throughout the state of Maryland that ask you to please vote NO on HB 836.

Thank You,

Sincerely,
Monte Skall
Executive Director
NCLDA

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Tickula is back and on the loose!

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