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CALL TO ACTION 2009 #7 (August 3, 2009)
from Pat Smith, President, Lyme Disease Association, Inc. (LDA)

In This Issue:
-- Chronic Lyme Language Passed
-- Key Senate Language
-- Key House Language
-- Thanks To All

On July 30, 2009, the Senate Appropriations Committee passed Lyme disease language contained in the Fiscal Year 2010 Labor, Health & Human Services, Education Appropriations bill. The vote was 29 to 1. Senator Christopher Dodd (CT-D), and Appropriations Subcommittee Chair, Tom Harkin (IA-D) were instrumental in passage of the language. The next step is a vote on the Appropriations bill by the entire Senate expected this week.

On July 24, 2009, the full House passed Lyme disease language contained in the Fiscal Year 2010 Labor, Health & Human Services, Education Appropriations bill (HR 3293). The vote was 264 to 153. Congressman Christopher Smith (NJ-R), author of the language; House Appropriations Committee Chair, David Obey (WI-D); and U.S. House Appropriations Committee Members Frank Wolf (VA-R) and Nita Lowey (NY-D) were instrumental in its inclusion.

Click here to see both the Senate and House language.
- The language which was adopted encourages CDC (Centers for Disease Control & Prevention) to develop more accurate tests and improve testing to account for acute and "chronic Lyme disease;" and to examine feasibility of a national surveillance system and a physician education program which includes the full spectrum of scientific research.
- It also encourages NIAID (National Institute of Allergy & Infectious Diseases) to sponsor a conference which represents all scientific viewpoints and intensify research to include "mechanisms of persistent infection."
- It encourages AHRQ (Agency for Healthcare Research and Quality) to create a peer review literature data base that includes "persistent infection."
- It encourages the Secretary of HHS (Health & Human Services) to improve government agency coordination, advise them of priorities, and identify future research needs within HHS and involve those agencies in diagnosing & reporting Lyme disease.

Left to Right: Debbie Siciliano, Co-President, Time For Lyme; Senator Christopher Dodd (CT-D), Lyme Bill Sponsor; Diane Blanchard, Co-President, Time For Lyme; and Pat Smith, President, Lyme Disease Association in June 2007 for introduction of that Lyme bill.

- In the strongest language in both houses, the Committee "directs" the Secretary to review the coordination of HHS efforts on tick-borne diseases to ensure that: a broad spectrum of scientific viewpoints is represented in public health policy decisions, accurate information is disseminated to the public and physicians, and actions are taken to develop & adopt improved diagnostics for Lyme disease. HHS shall submit a report to the House and Senate Appropriations Committees with the findings from this review by Sept. 30, 2010.
- The language includes an increase of $3.66 million for the Centers for Disease Control & Prevention (CDC) for Lyme, the only increase for diseases in the NCZVED Division, which is the one that contains Lyme. CDC's budget for Lyme has hovered just over $5 million for several years.
- It also encourages CDC to improve diagnostics and "improving utilization of diagnostic testing to account for the multiple clinical manifestations of acute and chronic Lyme disease," to have objective to determine long-term course of illness, to develop national reporting and public and "physician education program which includes the full spectrum of scientific research...."
- It encourages NIH (National Institutes of Health) to intensify research on tick-borne diseases including research increasing understanding of the full range of Lyme disease processes including mechanisms of persistent infection and to support research on development of sensitive and accurate diagnostic tests for Lyme disease capable of distinguishing between active and past infections. - It encourages NIH to sponsor a scientific conference on Lyme and other tick-borne diseases to represent the broad spectrum of scientific views on Lyme disease.

Congressman Chris Smith (NJ-R), Co-Chair of the House Lyme Disease Caucus, and Pat Smith, President of the LDA, met in June 2009, to discuss Appropriations, the Lyme bill and other Lyme related issues.

The national Lyme Disease Association (LDA), Time For Lyme (CT) and the California Lyme Disease Association have been working as a team in Washington, DC, for federal issues on Lyme and tick-borne diseases.

Thanks to the LDA's 34 partner groups in 23 states and all the other Lyme groups and individuals throughout the country, significant progress is being made. The coordinated efforts to contact the House and the Senate Appropriations Committee members was a huge success!

Chronic Lyme disease and persistent Lyme infection are terms included in both the House & the Senate Appropriations bills. Federal agencies will now look more closely at this aspect of Lyme disease.

Congratulations - we ARE making a difference!

Please click here for more information on the federal Lyme and tick-borne diseases bill.

Previous LDA Action Items:
2009 Action #1
2009 Action #2
2009 Action #3
2009 Action #4
2009 Action #5
2009 Action #6