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Volume: 1
Issue: 18
Date: 02-Aug-93


Table of Contents:

SPECIAL ISSUE: LEGISLATIVE UPDATE
NEWS: Senate LD Hearing Rescheduled
NEWS: Rep. Chris Smith Proposes $1 million for Aberdeen


Newsletter:

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*                  Lyme Disease Electronic Mail Network                     *
*                          LymeNet Newsletter                               *
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                     Volume 1 - Number 18 - 8/02/93


                       SPECIAL LEGISLATIVE UPDATE

I.   Senate LD Hearing -- Postponed until Thursday, August 5
II.  Rep. Chris Smith proposes $1 million for Aberdeen -- Support Needed
III. Jargon Index
IV.  How to Subscribe, Contribute and Get Back Issues



I. ***** SENATE LD HEARING *****

On Thursday July 22, many leaders of the Lyme disease community were informed
that Senator Edward Kennedy's powerful Labor and Human Resources Committee
was planning hearings on LD for Friday, July 30.  Dr. Allen Steere and a
patient cured with 2 weeks of antibiotics were said to be among the invited
speakers.  No chronic patient or treating physician was invited to speak.


The phone lines burned up that night as word rapidly spread across the
country.  Sen. Kennedy's office received 2000 calls the next day
complaining about the poor selection of guests.  The assault of calls
and FAXes resumed promptly Monday morning and did not let up all day.  They
finally yielded under the pressure and invited LymeNet Contributing Editor
Carl Brenner to talk about his experiences as a chronic Lyme patient.  
They also invited Dr. Joseph Burrascano, a highly respected treating
physician from East Hampton, NY.  Many patients and support group leaders
decided to attend.


Despite all of this, we were still unaware of what this hearing was supposed
to accomplish.  Was legislation pending?  No one seemed to know.  That is why
I waited 48 hours after hearing the initial news before I sent the it
across the Internet.  The news was changing too rapidly to send out notices
via USPS mail (snail-mail).


When people arrived at the Senate Dirksen Building Friday morning, they were
informed that the hearing was POSTPONED.  Sen. Kennedy was tied up in
committee hearings for President Clinton's controversial nominee for Surgeon
General, Ms. Elders.  Meanwhile in the full Senate, Republicans were staging
a filibuster.  There was not enough time or attention for the LD issue.  
Below is UPI's interpretation of what should have happened:


--
(UPI) -- 10:00 am EVENT: SENATE LABOR AND HUMAN RESOURCES COMMITTEE meeting
SUBJECT: Holds hearing on Lyme Disease. LOCATION: 430 Dirksen --July 30
PARTICIPANTS: --Andrea Kean of Baltimore, Md., who has recovered from
the disease; --Carl Brenner of Hawley, Pa., who suffers from a chronic
form of the disease; --Dr. Allen Steere of Boston; Dr. Joseph Burrascano
of East Hampton, N.Y.; --Kenneth Platt, a veterinary epidemiologist from
Ames, Iowa; --Dr. Mathew Cartter of the Connecticut Epidemiology
Program; --Dr. James Hughes, director of the National Center for
Infectious Disease at the Centers for Disease Control; --Dr. John
LaMontagne, director of the Division of Microbiology and Infectious
Disease at the National Institute of Allergy and Infectious Diseases,
CONTACT: Theresa Bourgeois or Kevin Winston, 202-224-4781
--


The hearing has been rescheduled for Thursday morning, August 5 in the
Dirksen Building room 430 (2 blocks from the Capitol on the corner of
Constitution Ave and 1st St).  The starting time is said to be 11am, but it
may start earlier.  Participants and supporters are urged to arrive earlier.
For last minute information about scheduling changes you may call the office
of Nick Littlefield, Staff Director of the Labor and Human Resources
Committee at 202-224-5465.


We need the support of the Lyme disease community.  Please make every effort
to attend.  We especially need younger individuals in attendance to show the
media that LD disproportionately affects younger people.



II. ***** REP. CHRIS SMITH PROPOSES $1 MILLION FOR ABERDEEN *****

After the cancellation was announced, Rep. Chris Smith (R-NJ) invited
individuals scheduled to attend the hearing to his office to discuss the
issue.  Rep. Smith announced that today (Monday morning) he is introducing
an amendment that would allocate $1 million to the Army's Environmental
Hygiene Agency at Aberdeen Proving Ground, MD, so they may continue their
efforts to determine the LD risk to soldiers.  They are also working to
determine the best way to reduce the risk of infection.  The results of
their work will be made available to the general public.  


The Army has been designated Executive Agent for a DOD Lyme Disease Program
with the Environmental Hygiene Agency serving as Lead Agent.  Unfortunately,
until the Amendment was introduced, they did not have the funding to operate
this program.


The news was well received by all in attendance.  Karen Forschner of the
Lyme Disease Foundation praised the individuals at Aberdeen for their
dedication and objectivity.


Rep. Smith asked all in attendance to help him push the amendment through
the House Rules Committee.  The hearing will take place on Tuesday at
1:30 pm.  The members of that committee are:


DEMOCRATS:
J. Moakley (MA) .................... 202-225-8286
B. Derrick (SC) ....................         5301
A. Beilenson (CA) ..................         5911
M. Frost (TX) ......................         3605
D. Bonior (MI) .....................         2106
T. Hall (OH) .......................         6465
A. Wheat (MO) ......................         4535
B. Gordon (TN) .....................         4231
L. Slaughter (NY) ..................         3615


REPUBLICAN:
G. Solomon (NY) .................... 202-225-5614
J. Quillen (TN) ....................         6356
D. Dreier (CA) .....................         2305
P. Goss (FL) .......................         2536


Please call the Rep. from your state.  If your state is not represented, you
may call the Rules Committee office at 202-225-9486.


Please voice your opinion of the *** Smith Amendment to H.R. 2401 ***.

Here is the Amendment:

               AMENDMENT TO H.R. 2401, AS REPORTED
               OFFERED BY MR. SMITH OF NEW JERSEY


At the end of title II (page  , after line  ), add the following new section:

1.  SEC.   . LYME DISEASE PROGRAM.
2.    (a) PROGRAM  -- The Secretary of Defense shall carry
3.  out a program relating to Lyme disease.  The program
4.  shall be carried out through the Environmental Hygiene
5.  Agency of the Department of the Army.  The Secretary
6.  shall provide that information relating to prevention, de-
7.  tection, or treatment of Lyme disease that is developed
8.  under the program and that may be applicable to the gen-
9.  eral public shall be disseminated to appropriate public
10. health authorities.
11.   (b) FUNDING -- From funds available to the Army for
12. fiscal year 1994 for research, development, test, and eval-
13. uation, the sum of $1,000,000 shall be available for the
14. program under subsection (a), of which $500,000 shall be
15. for one-time startup costs for equipment, facilities and
16. software development and $500,000 shall be for fiscal year
17. 1994 labor and operating expenses.



III. ***** JARGON INDEX *****

Bb - Borrelia burgdorferi - The scientific name for the LD bacterium.
CDC - Centers for Disease Control - Federal agency in charge of tracking
     diseases and programs to prevent them.
CNS - Central Nervous System.
ELISA - Enzyme-linked Immunosorbent Assays - Common antibody test
EM - Erythema Migrans - The name of the "bull's eye" rash that appears in
    ~60% of the patients early in the infection.
IFA - Indirect Fluorescent Antibody - Common antibody test.
LD - Common abbreviation for Lyme Disease.
NIH - National Institutes of Health - Federal agency that conducts medical
     research and issues grants to research interests.
PCR - Polymerase Chain Reaction - A new test that detects the DNA sequence
     of the microbe in question.  Currently being tested for use in
     detecting LD, TB, and AIDS.
Spirochete - The LD bacterium.  It's given this name due to it's spiral
     shape.
Western Blot - A more precise antibody test.



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