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copying this NEW info from www.lymenet.org which is currently down!
You gotta listen to this...25 minutes of feisty talk in congress about our lyme disease bills w/FRANK PALLONE!
CALL TO ACTION UPDATE 2008 #8 (September 28, 2008)
Pat Smith, President, Lyme Disease Association, Inc. (LDA)
www.LymeDiseaseAssociation.org
Update: Today, history was made and patients’ plight was revealed. By working together at grass roots level & focusing on what would best serve the entire community, our voices have finally been heard in the most prestigious Congressional arena.
What began as the routine business of Congressman Frank Pallone (NJ), House Energy & Commerce Health Subcommittee Chair− bringing his Committee health bills directly to the House floor for action− ended as a three Congressman debate on the plight of Lyme patients, chronic Lyme disease, and the failure of Mr. Pallone’s health sub committee to bring up the Lyme bill, HR 741 (Smith NJ).
Congressman Frank Wolf (VA), HR 741 co-sponsor, called Mr. Pallone on the carpet for burying Smith’s vital bill, which addresses the exploding Lyme disease epidemic sweeping the nation.
In an impassioned plea, Wolf repeatedly called for Congressman Smith’s bill to be brought up for action. He spoke of the increase in cases in his own state of Virginia and pointed out that Mr. Pallone comes from a high incidence area himself, New Jersey.
Mr. Pallone responded that Lyme disease is a serious issue that requires a lot of study, since some doctors and his neighbors who are doctors have said antibiotic treatment can be dangerous, even cause death.
Congressman Frank Pallone indicated to the Lyme Disease Association (LDA) that he would bring up the bill before his committee in 2008.
After the IDSA lobbied congressmen in DC, Pallone refused to post the bill for any action in committee, saying we have to wait for the IDSA to reconsider its Lyme disease treatment guidelines under the settlement with the Connecticut Attorney General, effectively putting the disposition of the bill in the hands of the IDSA.
Since that time, volunteer patient advocates have worked together and continued to educate Mr. Pallone and Congress about the science supporting chronic Lyme.
In April, the LDA held two congressional briefings in DC, and in September, LDA and National Capital each held a briefing in DC.
Congressman Wolf entered into the Record the effects of Lyme disease on his district and the nation, describing in detail various complications associated with Lyme and the consequences of not being adequately treated.
He reported Lyme case numbers have risen dramatically in his state, and he knows his constituents are suffering due to Mr. Pallone’s actions.
Congressman Christopher Smith then rose and laid out the rationale for action – vast underreporting of case numbers, misdiagnosis, inability of patients to get treatment and insurance reimbursement.
Mr. Smith then stated that his bill does not address treatment, but will provide a federal advisory committee and funds for much needed research to determine the status of chronic Lyme disease, that there is a companion bill in the Senate, and the House version has over 112 co-sponsors.
Mr. Smith said he personally knew many Lyme patients who were seriously debilitated due to chronic Lyme, and he described how patients were unable to be treated due to the treatment guidelines for Lyme disease published by the Infectious Diseases Society of America (IDSA) −a Society which has been investigated by the Attorney General of Connecticut for conflicts of interest in the guidelines’ development.
Mr. Smith read into the record excerpts from the AG’s action and settlement where the AG mentioned the conflicts and also the lack of all the science of Lyme disease being presented.
Mr. Smith also indicated that he believed a cover up of chronic Lyme exists.
Mr. Pallone called both Congressman Smith and Attorney General Blumenthal, “grandstanders,” and implied the AG was interfering rather than helping this situation.
Wolf & Smith demanded a hearing or some action on the bill; Smith cited a letter from the House Lyme Caucus of which he is co-chair, to Mr. Pallone.
Although the Congressional session is ending, a lame duck follow-up is still a possibility.
From the early days of educating representatives through massive letter writing campaigns, phone calls, petitions and countless personal visits to Washington DC offices, to the many rallies, protests, scientific presentations, formal gatherings and Congressional briefings, we are now seeing that the goals we set years ago are within our reach.
We have reason to celebrate.
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We will provide updates as they become available – please stay tuned and be ready to take action if needed.
We suggest the Lyme community thank these two brave congressmen but WAIT UNTIL MID-WEEK due to their tight schedules.
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For those who missed the exciting exchange on the House floor, you can hear the clips by clicking on
www.LymeRights.org note!!
click on link at top...took me awhile to find it!! betty
25 WONDERFUL DEBATE MINUTES COMMENTS! THEY GAVE PALLONE HELL!!!!
Make sure you go through the entire clip, which ends with two totally separate talks by Congressman Smith.
