CALL TO ACTION 2008 #8 (September 28, 2008)
from Pat Smith, President, Lyme Disease Association, Inc. (LDA)
Lyme & Tick-Borne Disease Prevention Education & Research Act
of 2007 S-1708 / HR-741
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 guideline'
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.
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.
For those who missed the exciting exchange on the House floor, you can
hear the clips by clicking on
www.LymeRights.org
Make sure you go through the entire clip, which ends with two totally
separate talks by Congressman Smith.
Pat Smith
President
Lyme Disease Association, Inc.
PO Box 1438
Jackson, NJ 08527
888-366-6611 information line
732 938-7215 fax
www.LymeDiseaseAssociation.org