Lyme Disease Association

Federal Lyme Bill HR 741: Congressman Smith helped us by introducing the Lyme bill. Let's help him to get this bill passed!
Lyme & Tick-Borne Disease Prevention, Education & Research Act of 2007

This bill was introduced into the US House of Representatives on January 31, 2007 by Congressman Christopher H. Smith (NJ). The bill is identical to last year's House bill (HR 3427) except for updated dates in the bill. We need your help now. Click on the link to get information on the Smith/Stupak bill, (history, co-sponsors, who to contact). Lyme disease desperately needs the $100 million over 5 years that this bill provides for research, physician education, prevention, and task force formation.

Statement from Pat Smith, President, Lyme Disease Association

New IDSA Guidelines Forbid Doctors From Using Clinical Discretion in Diagnosing Lyme Disease
JACKSON, NJ Oct. 10 ─ The national non-profit Lyme Disease Association (LDA), representing more Lyme disease patients than any organization in the United States, objects strenuously and with great alarm, to the restrictive new Clinical Practice Guidelines published this October by the Infectious Diseases Society of America (IDSA.) The new guidelines make it far more likely that Lyme disease will be missed in the early stages, when it is easier to treat. As a result, the guidelines set the stage for creation of a new generation of chronic Lyme disease patients, individuals with Lyme disease diagnosed and treated so late that they may never be cured. READ MORE OF THIS PRESS RELEASE.

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Lieutenant Richard Hubbard, USN, Lakehurst, and LDA President Pat Smith at a June 2006 health fair held on the base. Ms. Smith spoke about Lyme disease: how it is acquired, symptoms, prevention strategies and diseases being carried by other ticks.

Federal bills Lyme and Tick-borne Disease Prevention, Education, and Research Act of 2005 (HR 3427/S1479)

Pat Smith, LDA President after speaking at a July 6, 2006 press conference on the growing problem of tick-borne diseases on Long Island hosted by Senator Charles Schumer (NY). Dr. Ben Luft, Stony Brook, also spoke about the rising numbers of cases of Lyme disease. NY activists Diane Leary, Long Island Lyme Disease Association and Eva Houghie spoke from the patient perspective. The Senator called the conference to support the federal Lyme bills S 1479 and HR 3427. He indicated the growing problem, including the rise in the more aggressive lone star tick, needs a commitment of federal funding that the bills would supply.

Centers for Disease Control & Prevention (CDC) Answers
CDC's answers to some questions raised by Lyme Disease Association at meeting in Washington, DC November 2003, with office of Secretary of Health & Human Services, Tommy Thompson.

Health & Human Services Meeting, Washington, DC, November 2003
December 2003 Update

I have been receiving email the past two weeks from those who sent info to LDA regarding their diagnosis/insurance reimbursement based on surveillance criteria. Many want to send more info or wonder if theirs was helpful. Thank you all for the cooperation, and it was decidedly helpful, but we do not require any more info at this time.

The materials were taken by LDA to Washington, DC to a meeting with the offices of Tommy Thompson, Health & Human Services Secretary. The LDA put together a team of fourteen from across the country of state & federal officials, doctors, and LDA affiliate representatives from various states. In DC, we spent almost three hours presenting to HHS and very high ranking officials from Atlanta & Ft Collins CDC & NIH who were present either in person or through video teleconferencing.

We presented a solid case about issues including:

-restrictiveness of surveillance criteria & how that translates into lack of funds & effort on Lyme
-misuse of surveillance criteria,
-testing, including IgG & IgM, WB bands, PCR,
-CT lab reporting & loss of it & possible nationwide effects

-lack of up-to-date info from CDC on website
-Lyme can & does cause death
-Effects of Lyme on children

-lack of active distribution to doctors & health departments of info on surveillance criteria not to be used for diagnosis,
-lack of info on "non-eastern" LD,

-lack of research (on issues such as safety of blood supply, other insect vectors, possible sexual transmission) & funding--esp. relevant to WNV,
-other research issues including Klempner & unpublished studies
-prevention issues

-The team laid out a case which showed how decisions made by CDC & NIH had a trickle down effect causing patients not to be able to be diagnosed and treated and reimbursed by insurance companies and also doctors being charged by medical boards, one issue that seemed to shock HHS.

The team presented reasonable goals to the government.

We will be receiving an update on the results of the meeting in the future from the government and hopefully on what will be done about the goals which we laid out to them to solve/get to the bottom of some of these issues which so heavily impact our patients and doctors alike nationwide.