2007 Nat Cap Actions

The National Capital Lyme and Tick-Borne Disease Association Political Actions

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

March 19, 2007

VIA e-mail: karen.montgomery@house.state.md.us

And fax: (410) 841-3056

Honorable Karen S. Montgomery

House Office Building, Room 222

6 Bladen St

Annapolis, MD 21401

Dear Delegate Montgomery:

On behalf of all the members of our association and support group, I wish to express our gratitude for the attention and time that you have devoted to the problem of Lyme disease in Maryland, its debilitating effects on Maryland residents and the legislative responses available to the state legislature.

As we have explained to you and your staff, the National Capital Lyme Disease Association (NatCapLyme) has over 1000 members, composed of victims of Lyme disease, their family members and friends drawn from the Maryland, Washington, D.C. and Virginia area, nearly half of whom are Marylanders. We have studied legislative proposals from many states and the U.S. Congress. After careful consideration of H.B. 836, we wish to express our support for this bill, but we consider at least one amendment to be critical before the bill could be considered to be fair and balanced. We support the proposal that section A(2), lines 15 –17, (IV) be replaced with the following section:

(IV) Develop and disseminate balanced educational materials to health care providers including National Guideline Clearinghouse peer-reviewed guidelines for the diagnosis and treatment of early and chronic Lyme disease;

We believe that this amendment will provide the needed balance between two treatment protocol guidelines, each of which have been approved by a significant population of medical professionals. Significantly, both of these guidelines have been approved for publication by the National Guideline Clearinghouse™ (NGC), as will be explained below. Here is the website address:http://www.guideline.gov A simple search on the term “Lyme” brings up two treatment protocols, each created by a team of respected physicians. Indeed, the NGC is an excellent resource to which Maryland doctors and other health professionals may be referred. The work has already been done by NGC, a comprehensive database of evidence-based clinical practice guidelines and related documents. NGC is an initiative of the Agency for Healthcare Research and Quality (AHRQ), U.S. Department of Health and Human Services, created by AHRQ in partnership with the American Medical Association and the American Association of Health Plans (now America's Health Insurance Plans [AHIP]).

The NGC mission is to provide physicians, nurses, and other health professionals, health care providers, health plans, integrated delivery systems, purchasers and others an accessible mechanism for obtaining objective, detailed information on clinical practice guidelines and to further their dissemination, implementation and use. NGC provides an electronic forum, NGC-L for exchanging information on clinical practice guidelines, their development, implementation and use together with an annotated bibliography database where users can search for citations for publications and resources about guidelines, including guideline development and methodology, structure, evaluation, and implementation.

The criteria for inclusion among the NGC guidelines are already very rigorous and all of the criteria below must be met for a clinical practice guideline to be included. The full criteria is available on the NGC website.

Here are the first two sources that a physician would find searching the NGC for “Lyme”. Guidelines titles that address LD in the NGC.

Evidence-based guidelines for the management of Lyme disease. International Lyme and Associated Diseases Society - Disease Specific Society. 2004. 13 pages. NGC:003481
• Infectious Diseases Society of America practice guidelines for clinical assessment, treatment and prevention of Lyme disease, human granulocytic anaplasmosis, and babesiosis. Infectious Diseases Society of America - Medical Specialty Society. 2000 Jul (revised 2006 Jun). 150 pages. NGC:005085

And, eight more articles. A deeper search produces additional useful materials.

We believe that a Maryland physician is better served if encouraged to check the NGC, where an ongoing effort is made to include well documented and peer reviewed materials, and to grow that body of knowledge as research and knowledge grows. It is preferable that Maryland physicians be exposed to more, rather than less with current and broader based information. What they should not receive is the implication or outright suggestion that there is only one treatment guideline and that they must follow only it. That would truly disserve the citizens of Maryland.

Our members are enormously grateful for the attention you have paid to the problem of Lyme disease by your introduction of H.B. 836, but believe your legislation would be strengthened and improved by the inclusion of this crucial amendment. Any of us would be pleased for the opportunity work with you and your staff as you navigate the complicated and difficult issues surrounding the diagnosis and treatment of Lyme disease in Maryland. We believe we can and will be balanced and fair in our assessments and views.

Sincerely,

Monte Skall

Executive Director

National Capital Lyme Disease Association

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