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 Delegate Montgomery on HB 836

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

WHAT WE DO FOR YOU!