LymeNet Newsletter Volume 2 Issue 01

Volume: 2
Issue: 01
Date: 31-Jan-94

Table of Contents:

I. ANNOUNCEMENT: Class Action Suit Against Insurers II. ANNOUNCEMENT: LDF Conference - April 1994 III. NIH BAA: Animal Models For Chronic Lyme Disease IV. ANNOUNCEMENT: Video Tapes Available for Support Groups V. NEWSDAY: Lyme Vaccine Ready For Testing VI. QUESTION: Aftermath Of Tick Bite VII. How to Subscribe, Contribute, and Get Back Issues

Newsletter:

*********************************************************************** * The National Lyme Disease Network * * LymeNet Newsletter * ***********************************************************************

IDX# Volume 2 - Number 01 - 1/31/94 IDX# INDEX IDX# IDX# I. ANNOUNCEMENT: Class Action Suit Against Insurers IDX# II. ANNOUNCEMENT: LDF Conference - April 1994 IDX# III. NIH BAA: Animal Models For Chronic Lyme Disease IDX# IV. ANNOUNCEMENT: Video Tapes Available for Support Groups IDX# V. NEWSDAY: Lyme Vaccine Ready For Testing IDX# VI. QUESTION: Aftermath Of Tick Bite IDX# VII. How to Subscribe, Contribute, and Get Back Issues IDX#

I. ANNOUNCEMENT: Class Action Suit Against Insurers ----------------------------------------------------- FROM: LymeNet News BYLINE: By Marc Gabriel DATELINE: New York City, Tuesday, January 25, 1994

Ira M. Maurer, the attorney who recently won a landmark decision for Lyme disease on behalf of four employees of the Long Island Railroad, is currently assessing Lyme disease claims nationwide for inclusion in a class action suit against insurers.

Maurer, based in New York City, is currently on retainer by several Lyme patients fighting their insurers to receive benefits. According to Maurer, the problem is not limited to long term IV treatment. "Even claims for oral treatment are being denied," he said.

Given the mounting number of Lyme patients seeking legal action against their insurers, Maurer feels he can be more effective by combining cases. "Individual claims are cumbersome," said Maurer, who feels few lawyers are helping Lyme patients. "If I don't do it, no one will."

He is also aiming his guns at the insurance companies' advisors. At the very least, according to Maurer, their conduct is unethical. "They intentionally ignore evidence of persistent infection" he said. "Their actions may also be illegal." Maurer will look at possible racketeering violations.

While the advisors will claim there is no evidence long term treatment is effective, and therefore, such therapies are experimental, Maurer feels the courts will disagree. "The quality of patients' lives improves with treatment," he said.

"No one will be named in court unless they want to be named," he noted in response to patient concerns that they will be dragged into a long, expensive case. "The cost of litigation will originally be borne by the law firm -- there will be no cost up front," Maurer explained.

Maurer is on the Board of Directors of the Lyme Disease Foundation. However, this class action is independent of the LDF.

HOW TO SUBMIT YOUR CASE FOR POSSIBLE INCLUSION:

If you have been denied insurance benefits for treatment of chronic Lyme disease (including denials by self-insured companies), send a detailed summary of your case, either by mail or by FAX to Mr. Maurer at the address below. Your case summary should include the following information:

* Was there a known tick bite? * When you initially became symptomatic and description of symptoms * Did you ever have an ECM rash? * Have you ever tested positive on any test for the disease? * When you began treatment * A summary of your treatment and current situation * Identity of treating physician(s) * When you were denied insurance coverage * A copy of the denial letter * Mention where you learned of this class action * Include your name, address and phone number(s) and send to:

Ira M. Maurer Elkind, Flynn & Maurer 122 East 42nd Street New York, NY 10168-0132 FAX: (212) 986-3352

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II. ANNOUNCEMENT: LDF Conference - April 1994 ---------------------------------------------- From: The Lyme Disease Foundation

The VII Annual International Scientific Conference on Lyme Borreliosis and Other Spirochetal and Tick Borne Diseases will take place on April 22 and 23 at the Sheraton Hotel in Stamford, Connecticut.

Conference Chair: Martina Ziska, MD -- Scientific Director Conference Co-Chairs: Andrew D. McBride, MD -- Stamford Dept. of Health Julie Rawlings, MPH -- Texas Department of Health Steven Schutzer, MD -- Univ. of Med. and Dent. NJ

Topics Include: * Diagnosis (including Differential Diagnosis) * Clinical Mainfestations * Treatment Options * Immunopathogenesis * New Research Discoveries * Other Tick-borne Diseases * Other Spirochetal Diseases * Public Health Issues * Veterinary Issues * Writing & Submitting Articles to Peer-Reviewed Journals * Employer / Employee Education * Support Group Training * Community Education Training * Poster Sessions included

For more information, contact:

Martina Ziska, MD Medical Director The Lyme Disease Foundation, Inc 1 Financial Plaza Hartford, CT 06103 (203) 525-2000

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III. NIH BAA: Animal Models For Chronic Lyme Disease ----------------------------------------------------- 93.12.10 RFP-RFA NIH GUIDE, Volume 22, Number 44, December 10, 1993 BAA AVAILABLE: NIH-NIAID-DMID-94-31 P.T. 34

National Institute of Allergy and Infectious Diseases

The Bacteriology and Mycology Branch of the Division of Microbiology and Infectious Diseases, National Institute of Allergy and Infectious Diseases (NIAID), promotes and supports research in the biochemistry, physiology, and genetics of bacteria and fungi, especially studies involving medically relevant species. The focus of this Broad Agency Announcement (BAA) is on basic research that will serve to advance clinical protocols for treating or preventing chronic Lyme disease in human populations. Examples of such research include: the development of an experimental animal model for late stage Lyme disease that exhibits consistent development of histologically demonstrable arthritis, or neurological symptoms characteristic of chronic Lyme disease in an immunologically intact animal; the development of an animal model demonstrating immune responses reflecting the complexity of those observed in human disease; and the development of an animal model examining the role of the skin in facilitating infection, dissemination and persistence of spirochetes,
including host-bacterium factors that allow spirochete persistence in the skin in the absence of apparent host immune responses, the intracellular or extracellular location of spirochetes in the skin and other immunologically privileged sites, and the affects of spirochete persistence on determinations of therapeutic endpoints.

BAA NIH-NIAID-DMID-94-31 will be available on or about December 27, 1993, and proposals will be due approximately February 28, 1994. It is anticipated that one or more cost-reimbursement contracts covering one or more categories listed under the Research and Technical Objectives will be awarded for a period of up to four years. Any responsible offeror may submit a proposal that will be considered by the Government.

INQUIRIES

To receive a copy of this BAA, supply this office with a self- addressed mailing label. All inquires must be in writing and addressed to:

Carl R. Henn Contracts Management Branch National Institute of Allergy and Infectious Diseases Solar Building, Room 3C07 Bethesda, MD 20892

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IV. ANNOUNCEMENT: Video Tapes Available for Support Groups ----------------------------------------------------------- From: The Lyme Borrelia Outreach

Dr. Robert Gasser from the Lyme Borreliosis Study Group in Graz, Austria, visited the United States last fall. During his visit, he appeared on Stephen Nostrom's nationally syndicated "Lyme Borrelia Outreach" television program. Nostrom asked patients and support groups to send in postcards to greet Dr. Gasser -- the cards wallpapered the "Lyme Borrelia Outreach" set during the Gasser interview. The program and the postcard request were highly successful.

Nostrom would like to distribute videotape copies of the interview. He would also like to disseminate an interview with Dr. Joseph Burrascano of East Hampton, NY, and 2 internationally distributed documentaries on LD. He received donated videotapes from the 3M Corporation to make the copies.

Nostrom will now distribute copies of these features, but needs to know how many copies to make. If your support group is interested in receiving copies, please send your name, address and phone number to:

Stephen Nostrom Lyme Borrelia Outreach P.O. Box 496 Mattituck, NY 11952

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V. NEWSDAY: Lyme Vaccine Ready For Testing -------------------------------------------- From: New York Newsday Headline: Lyme Vaccine Ready for Testing; Researchers seeking 1,000 LI volunteers Date: January 16, 1994, Sunday Section: NEWS; Pg. 32 Byline: By John McDonald. STAFF WRITER

The search is on for 1,000 volunteers from Long Island to participate in the first major test of a Lyme disease vaccine on human beings.

"The volunteers have to come from high-risk areas, and we don't want people who sit in the house all day," said Dr. Eileen Hinton, director of the Lyme disease and immunization center at Long Island Jewish Medical Center in New Hyde Park. Hinton, the Long Island coordinator of the vaccine test by a private drug company said, "We are doing all we can to get everybody enrolled by January 25. We want everyone immunized before the first tick bites in April."

Not all of the area's top Lyme disease researchers support the experiment. "There are multiple strains of the bacteria that cause Lyme disease, and this vaccine will protect against only one," said Dr. Raymond Dattwyler, director of the Lyme Clinic Center of University Hospital at Stony Brook. "We're not recommending it to our patients."

The purpose of this experiment, Hinton said, is to determine how effective it is in preventing Lyme disease. She acknowledged that it will not protect against all strains of the disease but said, "It appears to prevent the strains most common here on Long Island."

The vaccine test, which Hinton said is being conducted with knowledge of the U.S. Food and Drug Administration, is sponsored by Connaught Laboratories Inc. of Swiftwater, Pa., and will involve 8,000 people in areas with high rates of Lyme disease. In addition to Long Island, the test areas include parts of New Jersey, Connecticut, Massachusetts and Wisconsin.

Before reaching this stage, the vaccine was tested on mice and twice on groups of people, the first with 36 subjects and the second with several hundred, according to Lenore Cooney, a spokeswoman for Connaught.

Hinton said that the earlier tests established that the vaccine is safe enough to be tested on people.

She added that the Connaught vaccine is made from a protein of the disease-causing bacteria, meaning it cannot in itself cause the disease. Vaccines made from the bacteria itself have been known to cause the diseases they are meant to prevent.

[...]

FDA policy is to decline comment on whether a specific drug is being tested. The FDA must be assured that a drug is safe before it can be used in a human experiment, FDA spokesman Arthur Whitmore said. He added, "There is nothing that is risk-free in drug testing, and the trial participants must be fully informed of the risks and provide their consent to take part."

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VI. QUESTION: Aftermath Of Tick Bite ------------------------------------- Sender: [email protected] (Jim Hornbeck) Subject: aftermath of bite

This question comes from a friend in the Seattle area who does not have Inet access. I forward the newsletter to her regularly.

"Since being bitten by a Lyme disease carrying tick last June 13th I took Tetracycline for 30 days. Now I have a small hard lump where the tick bite was. The lump is now about 1/8 inch in diameter and is a reddish brown color. I've gone to two doctors who don't know much about this sort of thing. Should I be worried?"

Thanks in advance.

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