Re: Urgent notice on Congressional letter

From: GregGerber (gregorygerber_at_hotmail.com)
Date: 01/15/05 

Date: 15 Jan 2005 09:32:07 -0800

Weisman, why not wait until I get the documentation and information in
full. I am not saying you are wrong --though I think you are missing
the exact history here, and are not precisely right; let us wait until
I have the material, and I will post it here. I believe this bill
called for a report to be issued back to Congress on the "instructions"
or "recommendations," and I think NIH was instructed by this launguage
and did follow through. That is my information. But your questions are
valid and reasonable, I will nail it down to provide an answer. Please
wait until I do. You have raised legitimate questions, but there simply
is no more point in debating it until there are solid facts before us.
You have pointed to a dearth of documentation for what I have said, and
I agree; now let me get the documents and then we can talk further. GG

a_weisman@yahoo.com wrote:
> This is what LDF misrepresented as a "law". It was NOT. It never was.
> It was part of the language in a committee report. It was not
identical
> to the report of the House nor to that of the conference which was
> created to resolve differences between language in the Senate
> appropriations LAW and that of the House (this is part of the
> legislative process, bills have to be passed indentically in both
> houses, conferences are used to resolve differences in languge, see
how
> a bill becomes a law recently posted here)
>
> This language had no mandatory effect and little symbolic or salutory
> effect in that it is routinely ignored--look at the report in
question
> it contains provisions about many many pet causes of congressmen or
> senators or both.
>
> And Lyme patients ran around telling doctors, insurance companies and
> legislators about this great new "law" and LDF in some desperate
> attempt to prove that they still had some relevance to Lymeland and
in
> an attempt to "win" the battle of the two bills raging between ldf
and
> lda new jersey "the karen" vs "the pat"
>
> Well so this is it.
>
> You can probably tell from the language that there's nothing
mandatory
> about it. And as I said as a practical matter in the real world of
NIH
> and Congress this kind of stuff is routinely ignored.
>
>
-------------------------------------------------------------------------------------------------------------------
>
> LDFTF Jan 30 2002, 6:02 pm show options
>
> Newsgroups: sci.med.diseases.lyme
> From: l...@aol.com (LDFTF) - Find messages by this author
> Date: 31 Jan 2002 02:02:18 GMT
> Local: Wed, Jan 30 2002 6:02 pm
> Subject: New Federal Law could help Lyme Docs and Patients
> Reply | Reply to Author | Forward | Print | Individual Message | Show
> original | Report Abuse
>
> Dear Friends
>
>
> I am pleased to announce a new Federal Law (Public Law 107-116), that
> will have
> a
> major impact on the Lyme disease community, has passed the Senate and
> House,
> and was signed by President Bush on January 10, 2002. We and others
> have worked
> on the
> Lyme wording in this bill for over a year and know it will be of
great
> benefit
> to
> physicians and patients across the country. This is another way we
are
> helping our doctors in medical licensing hearings, insurance
> reimbursement,
> and other issues.
>
>
> This law reinforces that the CDC's Lyme disease (LD) Case
Surveillance
> Definition is not a standard of care for the diagnosis and treatment
of
> Lyme
> disease. Sections of medical protocols that rely on the CDC LD Case
> Definition for diagnostic or treatment standards are misusing this
> protocol and should be invalid. A copy of the wording is on the lower
> part of
> this
> ***.
>
>
> This Public Law Appropriations wording states, along with other
things
> about Lyme disease, that the CDC's case surveillance definition "is
> reportedly misused as a standard of care for healthcare
reimbursement,
> product (test) development, medical licensing hearings, and other
legal
>
> cases." This reinforces that protocols misusing this case
definition
> are
> inappropriate standards of care. The wording then instructs the CDC
to
> correct this misuse. Other important wording includes concern about
the
> Lyme
> vaccine, broadening of the Lyme Case Surveillance Definition, and
> development
> of an improved test.
>
>
> I hope you join me in thanking Congress and the President for
standing
> up for
> our rights and ask them to please help us with the next step....Sign
> onto the
> LIFT Act in the Senate
> (S969) and the House (HR 2118).
>
>
> Sincerely,
> Tom Forschner
> Executive Director
> Lyme Disease Foundation
>
>
> Excerpts from Public Law 107-116 Signed by President Bush 1/10/02
> Departments of Labor, Health, and Human Services, and Education, and
> Related
> Agencies Appropriations Act 2002
>
>
> Senate Appropriations Report Language - S.1536, SR.107-84.
>
>
> This is the actual wording that was passed by the Senate (11/06/01,
> 12/20/2001)
> and
> House (10/11/01, 12/19/01) and included as part of the final bill
that
> was
> signed
> into Public Law by President George Bush on January 10, 2002.
>
>
> Centers for Disease Control and Prevention
>
>
> Lyme Disease - The Committee is deeply concerned about the safety of
> the
> Lyme disease vaccine (LymeRix). Over 1,000 adverse event reports were
> filed
> with the Food and Drug Administration from December 1998 to October
> 2000. The
> Committee encourages CDC to work closely with the FDA to ensure that
> all
> adverse event reports are thoroughly and expeditiously investigated
to
> ensure
> public safety as the vaccine is being distributed. Investigators
should
> pay
> particular attention to patients' reports of arthritis when
evaluating
> these
> reports.
>
>
> The Committee recognizes that the current state of laboratory testing
> for
> Lyme disease is very poor. The situation has led many people to be
> misdiagnosed and delayed proper treatment. The vaccine clinical trial
> has
> documented that more that one third (36 percent) of the people with
> Lyme
> disease did not test positive on the most sophisticated tests
> available. The
> ramifications of this deficit in terms of unnecessary pain, suffering
> and
> cost is staggering. The Committee directs CDC to work closely with
the
> Food
> and Drug Administration to develop an unequivocal test for Lyme
> disease.
>
>
> The Committee is distressed in hearing of the widespread misuse of
the
> current Lyme disease surveillance case definition. While the CDC does
> state
> that 'this surveillance case definition was developed for national
> reporting
> of Lyme disease: it is NOT appropriate for clinical diagnosis,' the
> definition is reportedly misused as a standard of care for healthcare
> reimbursement, product (test) development, medical licensing
hearings,
> and
> other legal cases. The CDC is encouraged to aggressively pursue and
> correct
> the misuse of this definition. This includes issuing an alert to the
> public
> and physicians, as well as actively issuing letters to places
misusing
> this
> definition.
>
>
> The Committee recommends that the CDC strongly support the
> re-examination and
> broadening of the Lyme disease surveillance case definition by the
> Council
> of State and Territorial Epidemiologists. Voluntary and patient
groups
> should
> have input into this process. Currently there is just one definition
> ('confirmed case') of seven possible categories. By developing other
> categories while leaving the current category intact, the true number
> of
> cases being diagnosed and treated will be more accurately counted,
> lending to
> improved public health planning for finding solutions to the
infection.
>
>
>
> The CDC is encouraged to include a broad range of scientific
viewpoints
> in
> the process of planning and executing their efforts. This means
> including
> community-based clinicians with extensive experience in treating
these
> patients, voluntary agencies who have advocacy in their mission, and
> patient
> advocates in planning committees, meetings, and outreach efforts.
> Thomas E. Forschner
> Executive Director
> www.lyme.org

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