LymeNet Newsletter Volume 1 Issue 18

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:

***************************************************************************** * Lyme Disease Electronic Mail Network * * LymeNet Newsletter * ***************************************************************************** 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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