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POLITICAL ACTION: Proposed NJ legislation bodes ill for Lyme treatment throughout country; contact NJ sponsors to amend Lyme out of the bill

19 October, 2009

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Proposed New Jersey legislation to re-categorize Lyme disease as being of "unknown origin" poses a threat to Lyme treatment throughout the country. The Lyme Disease Association and allied patient groups are asking people across the US--not just those from that state--to contact NJ sponsors of the bill.

Text of Action Alert from LDA, CALDA, Time for Lyme and Lyme Disease Association of Southeastern Pennsylvania:

History

In our last Action Alert, we informed you of a Resolution already passed by the New Jersey Assembly for a "Neuro-Endocrine Immune (NEI) Center."

Click here to see the letter currently asking the New Jersey Senate to remove "Lyme disease" from the Resolution (SR 133) it will soon consider.

Click here to see the NJ Senate Resolution (SR 133) that will be voted upon.

Take Action Now

WHO: National Alert! We need everyone across the USA to contact the Resolution sponsor (Senator Bateman) and the NJ State Senate Health, Human Services, and Senior Citizens Committee members listed below, since more centers are being planned in more states.

WHEN: Start immediately.

WHAT: Talking points and email suggestions to address Resolution SR-133

Ask NJ Senators to remove "Lyme disease" from Resolution SR-133!

You can tell them that including Lyme disease with disorders of unknown origin will set Lyme research and treatment back.

You can tell them the IDSA, insurance companies and others will use the classification to prevent you from receiving appropriate treatment.

You can also tell them non-treatment or treating symptoms only and not the source are some of the reasons you are in this current situation.

Provide name, address and contact info (if a group, provide the group's name).

Sponsor and Committee Members- Contact Information

Resolution Sponsor

Senator Christopher Bateman (R)    Phone: 908-526-3600   FAX 908-707-4578 Email: SenBateman@njleg.org

Committee Members

Senator Joseph F. Vitale (D)             Phone: 732-855-7441   FAX 732-855-7558
Email: SenVitale@njleg.org

Senator Loretta Weinberg (D)*          Phone: 201-928-0100   FAX 201-928 0406
Email: SenWeinberg@njleg.org

Senator Diane B. Allen (R)                Phone: 609-239-2800   FAX 609-239-2673 Email: SenAllen@njleg.org

Senator Bill Baroni (R)                       Phone: 609-631-9988   FAX 609-631-0324
Email: SenBaroni@njleg.org

Senator Robert M. Gordon (D)          Phone: 201-703-9779   FAX 201-703-8127 Email: SenGordon@njleg.org

Senator Thomas H. Kean Jr. (R)       Phone: 908-232-3673 FAX 908-232-3345 Email: SenKean@njleg.org

Senator Dana L. Redd (D)                 Phone: 856-225-9068 FAX 856-225-9369 Email: SenRedd@njleg.org

Senator Ronald L. Rice (D)                Phone: 973-371-5665   FAX 973-371-6738 Email: SenRice@njleg.org

Senator Robert W. Singer (R)            Phone: 732-901-0702   FAX 732-901-0587
Email: SenSinger@njleg.org

Senator Jim Whelan (D)                     Phone: 609-383-1388   FAX 609-383-1497 Email: SenWhelan@njleg.org

* Also resolution co-sponsor

New Umbrella for Lyme Disease?

.Patients with Lyme disease should be alarmed by the recent effort to recategorize chronic Lyme disease as autoimmune, or to place it under a term apparently coined by P.A.N.D.O.R.A. for their own purposes, specifically, "Neuro-Endocrine Immune Disorder."

Lyme disease has a KNOWN ORIGIN - Borrelia burgdorferi. It should not be classified with these other conditions which are treated only to manage symptoms. Managing symptoms ONLY, while allowing a complex infection to progress unabated, is not in the best interests of patients with Lyme disease.

Concerns- State and National

The inclusion of Lyme disease in this Center's mission is a national concern for ALL Lyme patients since P.A.N.D.O.R.A. reports, "once the NEI Center is in full operation it is our vision to setup satelite NEI Centers in other states."

We are concerned that in response to your personal contacts with NJ legislators, promoters of the proposed "Neuro-Endocrine Immune (NEI) Center™" contacted all NJ legislators, stating in part, "it is unfortunate" and a "misguided" attempt "for an alleged patient advocacy group to oppose [our] efforts."

Please note, no one opposed their efforts, only the inclusion of Lyme disease. We applaud efforts to increase research and improve treatment for those negatively affected by any conditions that have no known cause, however, we know Lyme disease is not in that category.

An additional concern- this same group recently reassured NJ legislators that the "overall concept of the NEI Center's mission is already fully supported by administrators within the CDC, the National Institutes of Health (NIH), and the Vermont Department of Health."

NJ Senator Bateman, the Resolution's primary sponsor, also responded to patients' letters confirming that the "NEI is fully supported by the 'Center for Disease Control and Prevention' and 'National Institute of Health.'"

Additionally, NJ Legislators have informed us they are being told that New Jersey doctors can treat Lyme however they want, which is not the situation at all.

More Details About Proposed Center

This effort is spear-headed by CFS advocate, Kenneth Friedman, PhD, UMDNJ, and a Florida-based "neuro-endocrine immune" support group, P.A.N.D.O.R.A., for which he is Director of Public Policy. The Center will be located at the University of Medicine & Dentistry of New Jersey, home to both Mr. Friedman and Robert Wood Johnson Medical School.

We are concerned that Robert Wood Johnson Medical School (deeply involved in the Lyme vaccine clinical trials & was home to someone acknowledged in the IDSA Guidelines) has published numerous articles strongly discounting the notion that chronic Lyme disease symptoms remain after standard IDSA treatment. If symptoms remain, they are either considered by them to be psychiatric in nature or a result of autoimmune disorders, such as fibromyalgia and chronic fatigue syndrome.

At the recent IDSA Lyme Guidelines Review Panel hearing, it was reported that, "these syndromes have more in common than their apparent differences would suggest and may be best considered under the rubric of a Functional or more accurately, Dysfunctional, Somatic Syndrome."

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