Congressional Town Meeting Weathered the Storm

Pat Smith, Lyme Disease Association President, is shown with US Congressman Chris Smith (R-NJ); C. Ben Beard, Deputy Director, Division of Vector-Borne Diseases Center for Disease Control and Prevention, Dr. Richard Horowitz, Internist in Private Practice in New York  at Congressional Town Hall Meeting. Photo by Joyce Scatuccio Jolliffe

On May 29, 2019, The Lyme & Tick-Borne Diseases Congressional Town Meeting Sponsored by Congressman Christopher H. Smith (NJ-4) was held in the Wall Township, NJ, Municipal Building. Despite tornado warnings, flash flood warnings with torrential rains, a packed house of more than 200 people attended the three and a half hour event.

Wall Mayor Kevin Orender gave opening remarks on the seriousness of Lyme followed by Congressman Chris Smith discussing the spread of Lyme and tick-borne diseases and the difficulties of getting legislation passed to try to prevent disease and to help get research monies for patients who have difficulty getting diagnosis and treatment. He showed a stack of bills he has authored over two decades for Lyme disease. Dr. Ben Beard, Deputy Director , CDC Division of Vector-Borne Diseases, spoke on “Tick-Borne Diseases in the US: Burden, Trends, & What You Can Do To Protect Yourself.”  Dr. Richard Horowitz, Internist in Private Practice in New York, provided “Updates in the Diagnosis & Treatment of Lyme & Chronic Disease.”  Pat Smith, President, Lyme Disease Association, Inc.,  presented “Lyme & Tick-Borne Diseases: Their Spread, The Ticks, & Government Activity.”

Question & Answer session followed. View all Congressional Town Hall presentations on Rep. Smith’s website 

More Lyme information from Congressman Smith:
News 12 NJ – Rep. Smith: Federal funding for tick-borne diseases is a ‘joke’

Asbury Park Press (Jerry Carino)Lyme disease a bioweapon gone awry? Rep. Chris Smith pushes Trump to investigate

Video: News 12 NJ

Video: Asbury Park Press




Lyme & Tick-Borne Diseases Congressional Town Meeting

The Lyme & Tick-Borne Diseases Congressional Town Meeting will be held Wednesday, May 29, 2019 from 6:45pm-930pm at the Wall Township Municipal Building Community Room, 2700 Allaire Rd, Wall Township, NJ.  The town meeting is sponsored by US Congressman Christopher H. Smith. Hear from nationally-recognized Lyme disease experts about current efforts to combat Lyme and Tick-Borne diseases, updates on diagnosis and treatment, and how to protect yourself and your family, and more.  LDA president, Pat Smith, will join US Congressman, Christopher H. Smith; CDC, Deputy Director, Division of Vector-Borne Diseases, Ben Beard, PhD; and Richard Horowitz, MD as speakers at the meeting.  Seating is limited, and advanced registration is required.  To register click here, or visit ChrisSmith.House.gov.

 




NJ Passes S-560 1997 Places Ticks Under Mosquito Control

Below is an excerpt from this bill which places tick control in mosquito control. CLICK HERE FOR BILL

County mosquito control agencies throughout the State are
11 currently staffed and equipped to control nuisance and vector species
12 of mosquitoes. These commissions or agencies provide a central
13 operational unit within each county with the capability to advise and
14 assist 1[a State Lyme Disease Vector Management Board] the
15 Department of Health1 in the development and implementation of an
16 integrated approach to 1[the control of tick populations on public
17 lands within each county] manage tick-borne disease vectors1.
18 (cf: P.L.1991, c.277, s.1)




NJ Legislation Affecting Lyme in Schools

The Lyme Disease Association, Inc. (LDA) has provided in-service training to NJ school districts since 1992. The LDA has been a registered Professional Development Provider for the State of NJ since the year 2000, providing development in the area of Lyme and other tick-borne diseases. LDA has a number of resource people who help develop the material which LDA uses and distributes. All materials and presentations are free.

LDA (when it was LDANJ) helped to develop and pass the law which developed a state adopted curriculum for use in NJ schools and requires NJ school districts to annually in-service any staff member who has a student with Lyme disease.

LDA has also provided training to a number of other state school districts.

Lyme Disease Association
New Jersey Lyme Disease Legislative/Policy Fact Sheet (1992 – 2010)

The Lyme Disease Association of New Jersey, now LDA, was successful in 1992 in having the following laws adopted in New Jersey.

18A:35-5.1. Lyme Disease curriculum guidelines
1. The Commissioner of Education, in consultation with the Commissioner of Health, shall develop curriculum guidelines for the teaching of information on the prevention of Lyme Disease within the public school health curriculum. The guidelines shall emphasize disease prevention and sensitivity for victims of the disease. The Commissioner of Education shall periodically review and update the guidelines to insure that the curriculum reflects the most current information available.

18A:35-5.2. Availability of guidelines
2. The commissioner shall make the curriculum guidelines available to all school districts in the State and shall encourage their adoption by those districts which are located in areas of the State which have a high incidence of Lyme Disease.

18A:35-5.3. Guidelines for, training of teachers instructing infected students
3. The Commissioner of Education, in consultation with the Commissioner of Health, shall also provide curriculum guidelines for the training of all teachers who instruct students with Lyme disease which emphasizes the special needs and problems of students with the disease, in order to provide information about how best to teach those students. Each school district shall annually provide training to all teachers who instruct students with Lyme disease, based upon the guidelines.

26:2P-2. Governor’s Lyme Disease Advisory Council
2. There is created a 13-member “Governor’s Lyme Disease Advisory Council.” The council shall consist of: the Commissioners of the Departments of Environmental Protection, Health and Education, or their designees, who shall serve ex officio; and 10 public members who by virtue of education or experience are knowledgeable about the problems of Lyme disease, six to be appointed by the Governor, at least one of whom shall be a physician and at least one of whom shall be a veterinarian, two to be appointed by the President of the Senate and two to be appointed by the Speaker of the General Assembly.

The public members shall serve for three-year terms or until a successor is appointed; but of the members initially appointed, five shall serve for a term of three years and five shall serve for a term of two years.

Vacancies in the membership of the council shall be filled in the same manner as the original appointments are made and a member may be eligible for reappointment. Vacancies occurring other than by expiration of a term shall be filled for the unexpired term.

The members of the council shall serve without compensation but shall be reimbursed for traveling and other miscellaneous expenses necessary to perform their duties, within the limits of funds appropriated or otherwise made available to the council for its purposes. L.1991,c.277,s.2.

1996 S 560 Tick-Borne Disease Vector Management
Authorizes Boards of Chosen Freeholders [county government] to designate mosquito commissions and others to undertake tick-borne disease vector management program

NJ 2010 Core Curriculum Content Standard

Diseases & Health Conditions

“3. Compare and contrast diseases and health conditions prevalent in adolescents, including asthma, obesity, diabetes, Lyme disease, STDs, and HIV/AIDS.”

Core Curriculum Content Standards for Comprehensive Health and Physical Education Grade 6 Teen Health Course 1 © 2005

 




NJ A-269 Ins. Coverage & Doctor Protection

 

LDA Testimony to New Jersey Assembly Health Committee June 12, 2006

By Pat Smith, President, Lyme Disease Association, Inc.

According to the CDC (Centers for Disease Control & Prevention), Lyme is the most prevalent vector-borne disease. Research shows the Lyme bacterium has the ability to enter the central nervous system less than a day’s time after a tick bite,[i] yet the federal government’s expenditures on Lyme disease total ~$32M annually for 22-24,000 reported cases, compared to WNV expenditure of ~ 77M for ~ 2,500 reported cases.
 
Lack of funding, focus and communication about Lyme have led to inadequate public and physician education, misconceptions about Lyme’s seriousness, and lack of treating physicians. A climate of fear exists nationwide for treating physicians who are often afraid to diagnose and treat patients due to medical board investigations of those treating chronic Lyme. These investigations are often initiated by insurers or other physicians who do not recognize chronic disease or understand there are two standards of care for Lyme. Sanctions including supervision, fines, losing ability to treat Lyme patients, and license suspension and revocation have created a situation where patients are unable to obtain diagnosis, treatment, insurance reimbursement, disability, education or even understanding from their families and peers.
 
CDC reported case numbers nationwide for Lyme have ranged from 20,000-24,000, representing only 10% of actual cases meeting the CDC surveillance criteria[ii] so up to 240.000 new cases occur annually that do meet the CDC criteria, a number that does not even include cases that fall outside the CDC surveillance criteria. Preliminary 2005 CDC numbers show Pennsylvania (5449) New York (4031), and New Jersey (3372), 1,2,3, respectively, in reported Lyme cases, with a 25% increase in NJ cases over 2004 (2698).
 
Cases meet the CDC surveillance criteria if the patient has a physician-diagnosed EM (bull’s eye) rash, or positive blood work and major system involvement (cardiac, neurologic, musculo-skeletal).  Studies show EM appears less than 50% of the time. Lyme disease testing, especially the initial required screening test, the ELISA, is highly inaccurate. According to a letter from the NY DOH to the CDC, if NY had followed the 2-tier testing requirement for a particular year─ a + ELISA then followed by Western Blot─ 81% of non-EM cases would not have been confirmed. A Johns Hopkins study evaluating Lyme disease testing said current tests are about 75% inaccurate.[iii] Studies published in JAMA and elsewhere show that Bb antibodies form immune complexes, limiting the ability of the ELISA screening test, since it can only detect free antibody. [iv]
 
CDC states doctors should not use surveillance criteria for diagnosing Lyme, yet many physicians do. Two camps have been created─one,the institution-based physicians who see few Lyme cases, diagnose based on CDC surveillance criteria, and treat short-term using IDSA guidelines; the other, primarily private practice physicians who diagnose clinically and treat long-term when necessary following the ILADS (International Lyme & Associated Diseases Society) guidelines, and their patients, who are experiencing symptom relief from extended treatment.
 
The dispute arises partly because of improper use of CDC criteria to diagnose, unreliable testing, Lyme’s ability to mimic other conditions such as CFS, FM, MS, ALS, Lupus, even autism and Alzheimer’s, and its likelihood to be accompanied by other tick-borne diseases, clouding the diagnostic and treatment picture further. Babesiosis, bartonelliosis, anaplasmosis (aka human granulocytic ehrlichiosis), are being seen concurrently in patients in the Northeast. Delaying treatment or providing inappropriate treatment can lead to chronic Lyme disease, developed by an estimated 15% to 34% or more of patients.[v]
 
Patients diagnosed with chronic Lyme often cannot buy life insurance, nor can they donate blood. Red Cross blood donor guidelines say, “Accept persons with Lyme disease if they were treated, the disease resolved and at least one year has passed. Those with chronic Lyme disease are not eligible to donate blood.” The American Society of Clinical Pathologists’ blood donor guidelines state “defer indefinitely…Lyme disease.” The bacterium that causes Lyme has been shown to survive blood banking conditions, although to date, no cases of Lyme disease transmission have been reported through blood donations, although babesiosis has been reported through transfusion.
 
Doctors’ dilemma: do they treat sick patients who do not meet the CDC surveillance criteria and patients with chronic symptoms? Besides pressure from medical boards, doctors are pressured by insurance companies that often deny coverage to anyone not meeting CDC surveillance criteria, despite CDC warning that the criteria are not meant to be used for reimbursement. Insurance carriers strongly suggest to doctors they stop treating Lyme patients long-term or leave the plan. An insurance company letter to a New Jersey patient typifies the status quo: “Unfortunately, a number of unscrupulous practitioners in this and neighboring states have held themselves out as experts in the treatment of Lyme disease…. Because our organization has been appropriately vigilant and aggressive in dealing with certain practitioners, they have chosen to leave our network.” [vi]
 
The scarcity of treating physicians coupled with increased demand for them, has created a health care access crisis, with many patients traveling great distances to receive treatment from Lyme specialists. Access to health care is essential for patients with chronic Lyme disease. As a recently funded National Institutes of Health (NIH) study points out, these patients suffer a degree of disability equal to that of patients with congestive heart failure. Many are unable to work or properly care for their family. Failure to address their need for health care swells the disability rolls of states and ultimately increases health care costs as untreated patients impose a heavier burden on emergency and medical support systems.
 
School systems are burdened as Lyme students are classified and home instruction roles increase with students unable to attend school due to chronic disease. A Columbia University study shows a Lyme student drop in IQ of 22 points, rectified with treatment. The cost to states in both disability and education dollars is measurable and significant. The cost in human suffering is staggering but un-measurable, but surely weighs heavily on the conscience of any reasonable person.
 
The legislature or executive branch in some sates has intervened to correct injustices to patients, e.g., NY’s memo from the (Office of Professional Medical Conduct) OPMC to its staff stating that physicians cannot be investigated based solely on their long-term treatment of Lyme disease; RI and CA’s doctor protection laws. PA has a doctor protection/mandatory insurance coverage bill passed the house and awaiting senate action. RI has mandatory insurance coverage, and FL, MD, and MN have (are) also considered Lyme disease legislation. In NJ, we have worked with the NJ State Board of Medical Examiners to place Lyme literate physicians on its Review Board, and A-269 (Chivukula) mandating coverage for testing and treatment of tick-borne diseases has been introduced.
 
As you know, companion bills have been introduced into the US House (HR-3427 Smith/Kelly) and US Senate (S-1479 Dodd/Santorum), providing $100M over 5 years for Lyme disease research and education. Both US Senators (NJ) have signed onboard and 50% of NJ congressmen. Almost 70 congressmen to date support the bills, which also create a patient/ physician/researcher task force with input to Health & Human Services (HHS). Thanks to theNJ Assembly for unanimously approving AR-55 supporting these bills. 
 
LDA has briefed HHS in DC on doctor-patient issues and expects to meet shortly with HHS Secretary and the CDC Director for further discussion. In 2005, for the 2nd time, LDA met with US Army CHPPM (Centers for Health Promotion & Preventive Medicine) at Aberdeen Proving Grounds where they are testing ticks from US military bases for Lyme and other tick-borne diseases. The army has also developed a laptop-sized testing device which can be used in the field for PCR testing of ticks so that those bitten can immediately know if the tick carries Lyme disease and can receive treatment if necessary. It has patented the device and is in discussions with a private company to produce the product. 
 
Since the late 80’s, CHPPM has mapped and created risk assessments for Lyme disease at US military installations and is now adding tick infectivity rates. The information can be beamed to satellites and then eventually to handheld receivers to be carried in the field, advising the troops where the population and infectivity rates of ticks are high, so they may maneuver troops around high risk areas. CHPPM has recently used the tick data on its Virginia Ft. A.P. Hill installation which hosts the Boy Scout jamboree to determine tick location so they could map and spray those areas for ticks before the Scouts arrived.
 
NASA and the NIH have a joint culturing project for bacteria including Borrelia burgdorferi, the Lyme disease causative agent, using microgravity chambers, which mimic conditions in space and in the human body. [vii]This could lead to better success culturing this organism which now is difficult to do. The NIH has just funded a study to map the genome of the deer tick, and according to one of the NIH project researchers, tick expert Dr. Stephen Wickel, the army just kicked in almost $5 million because they fear that ticks will be used to spread bio warfare agents.[viii]
 
Tick control should have been a priority. 20 years ago, central NJ was considered to be the northernmost range of the lone star tick, a tick much more aggressive than the deer tick. Instead of waiting quietly on low lying vegetation for a passing animal to brush against it, the lone star will stalk you from 30 feet away. It has spread up to Maine and a recent study placed it in Mass and NY. It is carrying Ehrlichiosis (HME), tularemia RMSF and STARI, southern tick-associated rash illness, a Lyme-like disease that causes the same symptoms and rash. Few in NJ or anywhere recognize the lone star’s presence or the fact it is spreading disease.
 
Preventive measures need to be combined with measures to solve the problems of those already infected with chronic disease and those at risk for developing it. Physicians’ right to freely practice medicine without vested-interest interference and the patients’ right to receive timely diagnosis and appropriate treatment need to be considered in the context of a quote from CDC spokesman Paul Meade in the NH Union Leader. “Can I say chronic infection never, ever occurs? No, of course I can’t, and that’s where one has to not be dogmatic about these things,” says Meade.
 
Today’s hearing is necessary and not unprecedented. New York, Connecticut and RI held 2 full day dedicated Lyme disease hearings, the latter running until midnight, Texas and California, one dedicated hearing each. Pennsylvania House majority caucus invited LDA to present several times as have the governors of New Hampshire and RI.
 
The legislature should consider passing A-269 (Chivukula) mandating insurance coverage and consider introducing NJ doctor protection measures. Adoption of such measures will ensure that patients receive necessary diagnosis and treatment, cutting costs long-term by reducing disability, special education costs, and the other costs associated with chronic Lyme disease. You have the rare opportunity to save thousands of people untold suffering, many of whom may be our children and grandchildren, who run some of the highest risk of acquiring the disease. Playing outdoors, petting the dog, rolling in the leaves, and sitting on a log are all risky behaviors for the development of Lyme disease, yet are all activities enjoyed by children. Keep that in mind while listening to patient stories today. Thank you.
 
                                                                                  §
 
Other Recommendations, Footnotes, & Background Page
 
 
Other proposed solutions
 
For the Department of Health (DOH):
  • send letters to all licensed physicians in the state: CDC surveillance criteria are not to be used for diagnosis; Lyme is a mandatory reportable disease.
  • send letter to DYFS telling them not to charge parents with Munchausen’s by proxy for having children treated long-term for Lyme disease by licensed physicians.
  • require Lyme disease continuing medical education (CME) credits for state-licensed physicians. Alert physicians about available conferences including those that cover chronic Lyme disease such as LDA/Columbia University conference and the ILADS conference to be held October 20 and the 21st/22nd, respectively, in Philadelphia.
  • develop a system to track physician-diagnosed cases that do not meet CDC criteria to determine the true incidence of the disease. The DOH already has these reports from physicians.
Department of insurance (DOI):  alert insurers that they cannot deny Lyme disease treatment based on the CDC surveillance criteria.
Department of Education (DOE): remind school districts that mandatory inservice is required for staff who have children with Lyme disease, keep properties maintained, post tick warnings where necessary, and develop trip policies reflecting high risk areas.

 


[i] Steere, Allen, Mandell, Douglas, & Bennett,  Principle sand Practices of Infectious Diseases, 4thed. 1995.
[ii]  The Front Line Against Lyme Disease, Herald News May 4, 2004. NJ (Meade, Paul CDC )
[iii] P. Coulter et al, J. Clin Microbiol.. 2005Oct.; 43(10): 5080-4 Two Year Evaluation of Borrelia burgdorferi Culture and Supplemental Tests for Definitive Diagnosis of Lyme Disease
[iv] S. Schutzer et al, JAMA Vol 282, No. 20 Borrelia Burgdorferi: Specific Immune Complexes in Acute Lyme Disease, Nov. 24, 1999
[v] Shadick NA et al Ann. of Internal Medicine Long-Term Clinical Outcomes of Lyme Disease, Vol. 122, Issue 12 June, 1994 ; Asch ES, et al Lyme disease: an infectious and postinfectious syndrome. J Rheumatol. 1994; 21:454-61.
[vi] Horizon Blue Cross Blue Shield letter to patient, August 24, 1999
[vii]Lyme Disease Association& Columbia University Lyme & Other Tick-borne Diseases: A 21st Century View, Princeton medical conference brochure, November 10, 2001
[viii] Shapley, Dan Speakers Hail Lyme Research Poughkeepsie Journal April 27, 2006
 
LDA Background: LDA is an all-volunteer national organization whose goals are education, prevention, research and patient support. LDA has supported research projects coast to coast, many published in peer review including JAMA, Infection, Neurology, Journal of Clinical Microbiology, and Proceedings of the National Academy of Science. LDA will jointly sponsor, along with Columbia University, its 7th fully CME accredited medical conference in Philadelphia on October 20, 2006. LDA has chapters, affiliates and programs nationwide, and along with its CT affiliate, TFL, LDA is partnering with Columbia University to open an endowed chronic Lyme disease research center, the first of its kind in the world. Approximately $200,000 remains to open the center. LDA has the LymeAid 4 Kids fund for children uninsured for Lyme disease so they may be evaluated and begin treatment. LA4K is supported by internationally acclaimed author Amy Tan.



Ocean Co. NJ Report by Town on Ticks Collected

The 2016 Ocean County NJ Master Gardner’s Annual Tick Report is a compilation of data on ticks collected from Ocean County, NJ residents who bring in ticks they find to be identified by the Ocean County Rutgers Cooperative Extension Agency in Toms River, NJ. It is printed with permission.

Click here for the Report

2016 OceanCountyMasterGardenersAnnualTick Page 1 lores




Lyme Disease Curriculum Guidelines Laws Passed in NJ

The Lyme Disease Association of New Jersey, now LDA, was successful in 1995 in having the following laws adopted in New Jersey, which developed Lyme disease curriculum guidelines for use in NJ schools and require NJ school districts to annually in-service any staff member who has a student with Lyme disease. P.L. 18A 35-5.1-5.3 (1992)

18A:35-5.1. Lyme Disease curriculum guidelines
1. The Commissioner of Education, in consultation with the Commissioner of Health, shall develop curriculum guidelines for the teaching of information on the prevention of Lyme Disease within the public school health curriculum. The guidelines shall emphasize disease prevention and sensitivity for victims of the disease. The Commissioner of Education shall periodically review and update the guidelines to insure that the curriculum reflects the most current information available.

18A:35-5.2. Availability of guidelines
2. The commissioner shall make the curriculum guidelines available to all school districts in the State and shall encourage their adoption by those districts which are located in areas of the State which have a high incidence of Lyme Disease.

18A:35-5.3. Guidelines for, training of teachers instructing infected students
3. The Commissioner of Education, in consultation with the Commissioner of Health, shall also provide curriculum guidelines for the training of all teachers who instruct students with Lyme disease which emphasizes the special needs and problems of students with the disease, in order to provide information about how best to teach those students. Each school district shall annually provide training to all teachers who instruct students with Lyme disease, based upon the guidelines.

 




Governor’s Lyme Disease Advisory Council Law Passed

The Lyme Disease Association of New Jersey, now LDA, was successful in having the following law adopted in New Jersey: 1991 A4223 An act establishing a governor’s Lyme disease advisory council. Law PL 1991 Chapter 27

26:2P-2. Governor’s Lyme Disease Advisory Council
2. There is created a 13-member “Governor’s Lyme Disease Advisory Council.” The council shall consist of: the Commissioners of the Departments of Environmental Protection, Health and Education, or their designees, who shall serve ex officio; and 10 public members who by virtue of education or experience are knowledgeable about the problems of Lyme disease, six to be appointed by the Governor, at least one of whom shall be a physician and at least one of whom shall be a veterinarian, two to be appointed by the President of the Senate and two to be appointed by the Speaker of the General Assembly.

The public members shall serve for three-year terms or until a successor is appointed; but of the members initially appointed, five shall serve for a term of three years and five shall serve for a term of two years.

Vacancies in the membership of the council shall be filled in the same manner as the original appointments are made and a member may be eligible for reappointment. Vacancies occurring other than by expiration of a term shall be filled for the unexpired term.

The members of the council shall serve without compensation but shall be reimbursed for traveling and other miscellaneous expenses necessary to perform their duties, within the limits of funds appropriated or otherwise made available to the council for its purposes. L.1991,c.277,s.2.




NJ 2009-2010 Legislative Efforts

Neuroendocrine immune disorders
AR 122/SR133 New resolution, SR-20, introduced without the words “Lyme disease” in it in 2010
Initiated by chronic fatigue advocates
Asked NJ legislature to memorialize formation of NEI Center that includes Gulf War Syndrome, multiple chemical sensitivity, chronic fatigue syndrome, & Lyme disease
LDA and most other Lyme groups opposed the Resolution
Lyme not autoimmune disease but has specific bacterial cause
Motion did not come up for vote in Senate
Failed
Passed the Senate in June 2010

Bill is now Dead

 




NJ Adopts Lyme Disease In Core Curriculum

New Jersey Department of Education Adopted NJ Core Curriculum Content Gr 6
Section : “Diseases & Health Conditions”
#3. Compare and contrast diseases and health conditions prevalent in adolescents, including: asthma, obesity, diabetes, Lyme disease, STDs, and HIV/AIDS
SE: 191-195, 200-201
Applying Health Skills 201
Core Curriculum Content Standards for Comprehensive Health & Physical Education Grade 6 Teen Health Course 1- 2005