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Comptroller General Investigation of Ticks/Vectors & Biowarfare Passes House

The Lyme Disease Association announces that the House voted this week to pass a number of amendments to the NDAA, National Defense Authorization Act, including a Congressman Chris Smith amendment —The Comptroller General of the United States shall conduct a review of whether the Department of Defense experimented with ticks, other insects, airborne releases of tick-borne bacteria, viruses, pathogens, or any other tick-borne agents regarding use as a biological weapon between the years of 1950 and 1977.  

There is information in various publications that such activities did occur, especially in the book “Bitten” by Kris Newby– a science writer at Stanford University—a book, which explores the evidence through actual government documents and interviews with some researchers who were involved that document such experiments.

The Lyme Disease Association Inc. has worked with Congressman Smith (NJ-04) on this legislative issue since 2019, with his introduction of a similar amendment which passed the House and in 2020 when this current version of the amendment was first passed by the House.

Said LDA President Pat Smith, former 4 year member of the HHS Tick-Borne Disease Advisory Committee: “With 476,000 people being diagnosed and treated for Lyme disease, in the US annually, patients and the public are entitled to know the truth about what past government research may reveal not only about the documented tick releases along the Atlantic bird flyway but also about research on the mysterious ‘Swiss agent’ which Dr. Willy Burgdorfer identified as a new Rickettsia strain in his work for the US Government– at Rocky Mountain Labs and in Switzerland.  The book indicates there is speculation that this pathogen, if crossed with Borrelia, might well complicate treatment and thus be a candidate for biowarfare. There is the possibility that any uncovered information could lead to facts which could shed light on the current epidemic of Lyme and other tick-borne diseases (TBD) and perhaps lead to cures. We thank Congressmen Smith for his continued push to make the truth known and the US House of Representatives for their vote to approve the amendment. ”

Some things author Newby revealed for the first time in the book were: that ticks were developed and deployed as stealth biological weapons during the Cold War, and that Willy Burgdorfer, the scientist the Lyme bacteria, Borrelia burgdorferi, was named after, was at the center of this program. According to Newby, specific revelations she makes in book include:

  • A 1962 pilot study where infected ticks were dropped on Cuba sugar workers.
  • Releases of hundreds of thousands of radioactive, aggressive Lone Star ticks on the Atlantic coastal bird flyway.
  • Omissions of other microbes transmitted with Lyme-carrying ticks during the original outbreak (“Swiss Agent”).
  • Documentation of military studies where live disease-causing bacteria, some which can be spread by ticks, were sprayed from planes, boats and vehicles on the unsuspecting American public.

The Lyme Disease Association (LDA) encourages Lyme advocates, patients, and the public across the country to contact both of their US Senators to champion and support this amendment. After 45 years of Lyme disease, the truth must be uncovered.

Other Information

Amendment text

Congressional Record

Congressman Smith press release

House Armed Services Committee


Pat Smith’s Facebook Quote:

On behalf of Pat Smith, Lyme Disease Association’s President, I am sharing this post at her request.   Annie Mennella, LDA FB Moderator. 9/25/21

The Lyme Disease Association (LDA) has worked with Congressman Smith for 30 years trying to get answers on Lyme disease. The time is now ripe for this investigation to move forward and uncover Lyme’s murky origins, just as COVID’s origins are being examined. If an investigation is not done, we may never have any answers–answers which could even produce information that could help in determining treatments for TBDs or stopping their spread.

It is good news for the public and patients that In our fractured political environment, out of the 860 amendments offered for the National Defense Authorization Act (NDAA), only 476 were made in order, and this one was included in the even smaller number actually passed. This shows a huge interest by government to explore this issue of Lyme and tick-borne diseases.  Also, an amendment for a government investigation passed twice before in the House in 2019 and 2020.   This time we all need to help persuade the Senate to keep this amendment when both Houses go to the conference committee to iron out Senate and House bill differences.

 




COVID in White-tailed Deer?

In a recent study conducted by the U.S. Department of Agriculture’s (USDA) Animal and Plant Health Inspection Service (APHIS) serum samples were analyzed from free-ranging white-tailed deer for SARS-CoV-2 antibodies.
Researchers found that a cohort of white-tailed deer populations from Illinois, Michigan, New York, and Pennsylvania were exposed to SARS-CoV-2. The USDA-APHIS has published an informational brief that addresses both questions and answers regarding these findings. USDA-APHIS also expresses the need for more research on the significance of the finding of SARS-CoV-2 antibodies in free-ranging white-tailed deer,  as well as what, if any, potential impacts this may have on overall deer populations, other wildlife species, and humans.

Read the full publication here

Read more LDA Articles on COVID here




HHS TBD Working Group 2021-22: 1st Meeting Aug. 26

 The HHS Tick-Borne Disease Working Group (WG) of 2021-2022 will hold its first meeting on August 26, 2021. The details of the meeting can be found on the HHS TBD Working Group website. Verbal comments and written comments can be submitted according to rules on the website. This term is the last segment of the WG, which was mandated by the passage of the 21st Century Cures Act signed into law in 2016. The WG brings together Lyme and TBD stakeholders in a transparent setting where discussions are held and decisions are made on recommendations to be included in a report to Congress–this last report to be presented in 2022.  
 
Find information on the meeting below
 
Find Info on 2020 Report to Congress
More Info on the WG and 2020 Report to Congress
 
 



Emergency Meeting Planned After Rise in Myocarditis Following Covid Vaccine

Increased cases of myocarditis and pericarditis have been reported in the United States after mRNA COVID-19 vaccination (Pfizer-BioNTech and Moderna) since April 2021, particularly in adolescents and young adults. These rates for ages 16-24 following a second dose are above what is expected. Myocarditis or pericarditis has now been verified in 226 people ages 30 and younger who have received an mRNA COVID-19 vaccine and Federal Health Officials are investigating reports of approximately 250 more cases. 

Due to this increase, the Advisory Committee on Immunization Practices (ACIP) is scheduled to hold an emergency meeting on June 18, 2021 to discuss myocarditis cases and the American Academy of Pediatrics (AAP) plans to closely monitor meeting.  However, at this time, there is no recommended change to vaccination of adolescents 12 and older.

Cases have been reported predominantly in young males 16 years of age and older, with onset of symptoms typically manifesting within several days after mRNA COVID-19 vaccination. Symptoms have more often occurred after the second dose of vaccine than the first dose. 

It is recommended by the CDC that clinicians consider myocarditis and pericarditis in patients who develop acute chest pain, shortness of breath or heart palpitations within a week after vaccination, and to report cases of myocarditis and/or pericarditis after COVID-19 vaccination to the Vaccine Adverse Event Reporting System. (VAERS).

Read full American Academy of Pediatrics article here.

Read more LDA Articles on COVID vaccine here.




Congressman Gottheimer: Lyme Press Conference on Fed. Leg.– LDA Pres. Speaks

Rep. Josh Gottheimer & Pat Smith, LDA President at Press Conference, West Milford, NJ

Congressman Josh Gottheimer (NJ-5-D) held a press conference to discuss Lyme disease and three bi-partisan bills currently introduced into the House of Representatives. He spoke about the seriousness of the disease in NJ and in his district and of the need for funds to help with diagnostics and new treatments and help for the patients suffering from persistent symptoms. 

LDA President Pat Smith was asked to speak at the press conference on June 10, 2021 in West Milford, NJ, and discussed her personal family involvement with Lyme and tick-borne disease and how the LDA has been active in Washington fighting for help for patients which includes the establishment of the HHS Tick-Borne Disease Working Group, where she served for four years, and the recent introduction of the Children Inflicted by Lyme Disabilities Act, CHILD Act 2021 (HR 3636), for which LDA initiated and helped in development of the language.
 
The CHILD Act 2021 was introduced in the house by Lyme Caucus Co-chair Congressman Christopher Smith (NJ-4-R) and co-sponsored by Congressman Gottheimer and Congressmen Henry Cuellar (TX-28-D), Bill Posey (FL-8-R), and Brian Fitzpatrick (PA-1-R).  The purpose of the bill is “To amend the Individuals with Disabilities Education Act (IDEA to recognize more clearly that Lyme disease can cause disabilities that affect the education of children and to enhance educational services and related services for children with Lyme disease and other tick-borne diseases and for other purposes.” Children can have manifestations including cognitive impairment, mental confusion, memory loss, headaches, difficulty concentrating, speech difficulty, visual and hearing problems, dizziness, mood swings, outbursts, depression, sleep disturbance, OCD, and seizure activity, all of which affect their educational experience. Read LDA article on the Bill
 

Patients and family members & advocates with Pat Smith, LDA, at the Press Conference

Congressman Gottheimer also co-sponsored HR3637, introduced by Smith, authorizing HHS to be able to launch prize competitions for research. HHS and the Alexandra and Stephen Cohen Foundation have formed a public private partnership, LymeX, which will host competitions. The idea is based on the successful KidneyX program.  The LDA is on the webinars group for LymeX working to develop more trust with government and more ways to implement strategies for new research.

 
Congressman Gottheimer also co-sponsored The Stamp Out Lyme Act introduced by Antonio Delgatto (NY-19-D) which would provide a stamp to benefit Lyme research. The bill has 11 co-sponsors including Smith. The LDA worked on earlier versions of this bill in a prior Congress.
 

“Lyme disease can be brutally debilitating, hard to detect and treat, and cause real long-term health issues. It’s a problem that we must try to solve,” said Congressman Josh Gottheimer. “The federal action I’m announcing today will boost investment for Lyme disease research, incentivize the development of new treatments, and amend federal law to accommodate the health impairments that can be caused by Lyme disease in children, so they can receive the specialized education and care they need.”

Pat Smith at Podium. Photo Credit: Doreen Edwards, Tick Squad

“It is imperative that we get help for the thousands of sick Lyme patients — 29% are children. We need Congress to act quickly to not only provide money but to ensure the monies are actually being used to help Lyme and tick-borne disease patients by providing cutting edge diagnostics and treatment therapies for the 20+% who remain sick after a short course of antibiotics. I thank Congressman Gottheimer and the House Lyme Disease Caucus for their continued efforts in this area,” said Pat Smith, President, Lyme Disease Association Inc.

Several Lyme patients and family members spoke about their struggle with Lyme disease. Advocate Dorreen Edwards from Tick Squad in Sussex County spoke on the need to provide more education for schools and for health care providers. LDA partnered with the Tick Squad in 2019 to present a Lyme conference at Sussex County Community College in 2019. Read LDA article on Conference

Terry Duffy, Commissioner, Board of County Commissioners, County of Passaic and Don Weise, New York – New Jersey Trail Conference, also spoke on the issues surrounding Lyme disease.

Watch video of entire press conference on facebook.


 

 




IPM Pest Alert – Asian Longhorned Tick

Asian Longhorned Tick AlertNorth Central Integrated Pest Management Center (IPM) has issued a new pest alert focusing on the Asian longhorned tick (ALT), which includes details about the tick’s life cycle, identification, and management options. Females can reproduce without mating with a male, causing a threat to livestock due to large-scale infestations on one animal leading to stress, blood loss and death. According to studies, ALT may spread disease such as Rocky Mountain spotted fever and other tick-borne illnesses, as they feed on multiple hosts throughout their lives. In it’s native East Asia, ALT can transmit Rickettsia japonica, which causes Japanese spotted fever, and severe fever with thrombocytopenia syndrome (SFTS) virus, among others.

ALT is invasive in Australia, New Zealand and the United States. ALT was found in New Jersey in 2017, and as of February 2021, it is found in 15 states in the U.S.


The Public Tick IPM Working Group produced this pest alert with support from the IPM Institute and the USDA National Institute of Food and Agriculture, Crop Protection and Pest Management Program through the North Central IPM Center

Click here for IPM Pest Alert – Asian Longhorned Tick

Click here for North Central IPM Newsletter Article

Click here for LDA website information on the Asian Longhorned tick




Gottheimer Announces Federal Action to Combat the Uptick in Ticks & Lyme Disease in NJ

NJ has four times the national average of Lyme disease cases

West Milford, NJ, June 10, 2021

Above: Gottheimer in West Milford today.

WEST MILFORD, NJ — Today, June 10, 2021, U.S. Congressman Josh Gottheimer (NJ-5), a member of the Congressional Lyme Disease Caucus, announced bipartisan federal action to help protect families from Lyme disease and to find new treatments for tick-borne illnesses. Gottheimer was joined by environmental and health experts to highlight how North Jersey families can protect themselves from ticks and Lyme disease as they enjoy outdoor activities this summer.

New Jersey had four times the national average of Lyme disease cases in 2020. 

While Lyme disease can be treated with antibiotics in many cases, it can also be difficult to diagnose due to its diverse manifestations and a lack of reliable testing options. Many of those infected do not realize their diagnosis until the symptoms have become severe. Current tests for Lyme disease often produce false negatives. There is currently no cure for Lyme disease.

Today, Gottheimer announced that he is helping introduce and push for the following bipartisan bills:

The Children Inflicted by Lyme Disabilities Act — a bipartisan bill to help ensure children who suffer from Lyme disease get the care and attention they need. The bill (H.R.3636) will amend the Individuals with Disabilities Education Act so that the phrase “child with a disability” includes a child who needs special education and related services due to a Lyme disease health impairment.

Bipartisan legislation for competitions to find Lyme disease treatments — This bipartisan bill (H.R. 3637) will authorize the Department of Health and Human Services (HHS) to launch prize competitions to drive innovation and accelerate the discovery of new methods to counter and treat Lyme disease.

The Stamp Out Lyme Disease Act — a bipartisan bill (H.R. 3491) to create a brand new postage stamp to supplement congressionally-appropriated research funding for Lyme and tick-borne disease treatments at the National Institutes of Health (NIH).

“Lyme disease can be brutally debilitating, hard to detect and treat, and cause real long-term health issues. It’s a problem that we must try to solve,” said Congressman Josh Gottheimer. “The federal action I’m announcing today will boost investment for Lyme disease research, incentivize the development of new treatments, and amend federal law to accommodate the health impairments that can be caused by Lyme disease in children, so they can receive the specialized education and care they need.”

“It is imperative that we get help for the thousands of sick Lyme patients — 29% are children. We need Congress to act quickly to not only provide money but to ensure the monies are actually being used to help Lyme and tick-borne disease patients by providing cutting edge diagnostics and treatment therapies for the 20+% who remain sick after a short course of antibiotics. I thank Congressman Gottheimer and the House Lyme Disease Caucus for their continued efforts in this area,” said Pat Smith, the President of Lyme Disease Association Inc.

“The pandemic has proven that people need access to the outdoors to be mentally and physically healthy. We must be vigilant and check for ticks, but we can’t let Lyme disease keep us locked indoors. This legislation gives me hope that we’ll find a cure and finally stamp out Lyme disease, once and for all,” said Don Weise, of the New York-New Jersey Trail Conference and the West Milford Environmental Commission.

Gottheimer was joined at today’s announcement at the West Milford Wetlands Environmental Center by Passaic County Commissioner Terry Duffy, Lyme Disease Association President Pat Smith, President, New York-New Jersey Trail Conference Membership & Development Director  and member of the West Milford Environmental Commission Don Weise, and local Lyme disease patients and advocates Doreen Edwards, Whitney Klein, and Gloria Kim.

Watch the announcement here.

Below: Gottheimer meeting with local Lyme disease patients and advocates today.

Gottheimer’s full remarks as prepared for delivery are below.

There’s been a lot of news of the 17-year cicadas emerging across the East Coast and Midwest. We’ve got them here in New Jersey, and NJ.com reported yesterday that the cicadas’ invasion is at its peak. But, despite being incredibly loud and pervasive, these insects are pretty harmless. As we kick off the summer, the real, legitimate threat we have to face is ticks, and a disease they can spread: Lyme disease.

And as it’s been reported, there’s been a real uptick in ticks. 

I’m here this morning to make sure that New Jersey families know how to watch out for ticks as they enjoy activities outdoors this summer, and to announce new federal legislation to help combat Lyme disease, which many ticks carry, and to support patients dealing with Lyme disease.

Lyme disease can be brutally debilitating, hard to detect and treat, and cause real long-term health issues. It’s a problem that we must try to solve. 

The federal action I’m announcing today will boost investment for Lyme disease research, incentivize the development of new treatments, and amend federal law to accommodate the health impairments that can be caused by Lyme disease in children, so they can receive the specialized education and care they need. 

Here’s what we know about ticks this summer, here in North Jersey:

Annually, there are around 476,000 cases of Lyme disease reported across the United States.

Here in Jersey, and especially in more rural, beautifully-wooded communities like West Milford, Lyme disease is a major and growing threat. According to data from 2020, an average of 36 cases per 100,000 members of our population are diagnosed in New Jersey every single year — more than four times the national average.  Yes, we are a center for Lyme disease!

That means we have to be on the lookout for the culprit this summer: ticks.

Lyme disease is spread through the bite of infected ticks, which can attach to any part of the human body.

High-brush or wooded areas tend to harbor ticks, so families enjoying parks here in North Jersey this summer need to be careful. By using repellents, wearing proper clothing, and consistently checking yourself and your pets for ticks, and for a red circle on your skin, even after a tick bites and falls off, the risk of Lyme disease can be reduced. 

While Lyme disease can be treated with antibiotics in many cases, it can also be difficult to diagnose because of its diverse manifestations and a lack of reliable testing options. Many of those infected do not realize their diagnosis until the symptoms have become severe. Even the tests we have for Lyme often produce false negatives several times before an accurate diagnosis. And, unfortunately, there is no cure right now. 

From the Tick-Borne Disease Working Group, created by Congress, we know that 10 to 20 percent of Lyme disease patients will suffer from persistent symptoms, which can be chronic and disabling.  And we have families here in North Jersey who have seen the impacts of this disease firsthand.

Joining us today are several New Jersey patients and families, like Doreen, who spent years waiting for the correct diagnosis; Gloria, who had to search extensively to find a specialist to treat her son when he was diagnosed; and Whitney, who has seen an unprecedented spike in Lyme disease in her family and community.  My own sister-in-law has struggled with Lyme disease for more than a decade; one of my wife’s closest friends has faced debilitating years, too. It’s a silent attacker – and it’s time to fight back much more aggressively. 

That’s why, as a member of the Congressional Lyme Disease Caucus, I’m announcing my support for three key pieces of bipartisan legislation, so that we can better protect our families.

The bipartisan Children Inflicted by Lyme Disabilities Act will help ensure children who suffer from Lyme disease get the care and attention they need. That means — with this bill — for which I was one of the first sponsors with Republican Chris Smith, who represents south Jersey — if a child develops a mental disability or a health impairment because of their Lyme disease diagnosis, they can receive special education and services to help them learn and to manage the disease.

I’m also supporting bipartisan legislation to boost investment in preventing, diagnosing, and treating Lyme disease. Our bill, which I also helped introduce with Congressman Smith, who is an incredibly dedicated advocate in the fight against Lyme disease, will authorize the Department of Health and Human Services to create prize competitions to drive innovation and accelerate the discovery of new methods to counter and treat Lyme disease. It’s my hope that, with New Jersey’s leadership and innovation in the medical, pharmaceutical, and life sciences industries, we can play a key role in developing these new treatments — and maybe even a cure.

And finally, I’m announcing support for another key bipartisan initiative to boost investment in R&D for Lyme disease treatment. The Stamp Out Lyme Disease Act will create a brand new postage stamp to supplement congressionally-appropriated research funding for the National Institutes of Health (NIH) to research treatments for Lyme and tick-borne diseases.

That means, when you’re out mailing a birthday card or sending a letter to your grandmother, you can help fund the research we need to finally find better treatments for this disease.

On these fronts, I’m proud to be working across the aisle. There is nothing partisan about a tick bite and Lyme disease. 

This is not a left or right issue. This affects our families, and we need to do more.

It’s my goal that families from across New Jersey and our entire region will come enjoy the outdoors here in the Garden State this summer — whether it’s here at the West Milford Wetlands Environmental Center, at the beautiful Delaware Water Gap, or on New Jersey’s 72 miles of the Appalachian Trail, which run right through this Congressional District. I want families to protect themselves from ticks and from the Lyme disease they may carry, all while enjoying the natural beauty we have to offer. 

And I want our residents and families who’ve been affected by Lyme disease to know I stand with them — to push federal bipartisan action forward to boost investment in finding new treatments, and to make sure any child with any impairment or disability from this disease can get the educational services and care they need. 

To make progress on this, we must work together at every level — in Congress, and right here at home. Only then will we be able to overcome Lyme disease and its impacts.

I have every faith — by working together, like we’re coming together today,  here in the greatest country in the world— that our best days will always be ahead of us.

God bless you and may God continue to bless the United States of America.

###

Click here for press release on Rep. Gottheimer’s website

Click here for LDA article on the press conference




CFC 2021 Approves LDA as National Charity

CFC-Logo-LDAThe Lyme Disease Association, Inc. LDA has been designated as a national charity included in the 2021 Combined Federal Campaign (CFC) Charity List. CFC is part of the Office of Personnel Management (OPM). Each year, federal employees are provided with lists of approved charities for their workplace giving through the CFC. The LDA has met the requirements and been a part of CFC for 16 years running. LDA’s administrative and fundraising costs were determined to be only 4.3%, meaning 95.7 % went directly to programs.

The LDA’s CFC 2021 identification for donors is #11424, and the Lyme Disease Association, Inc. will appear in the listing of National/International Independent Organizations, which is published in each local campaign charity list. See your federal employer for details. Check the CFC website at: http://www.opm.gov/cfc/ for details about the Combined Federal Campaign.

Thanks to all those volunteers who have helped with our programs nationwide, and a special thanks to those who have been contributing through their federal workplace CFC to the Lyme Disease Association, Inc.




Delayed CDC Lyme Final Lyme Case Numbers for 2019 Finally Released

Deer Tick Questing

Lyme Disease Association (LDA) Announces CDC’s 2019 Final Lyme Disease Reported Case Numbers:  The Centers for Disease Control & Prevention (CDC) has just released the 2019 final Lyme disease reported U.S. case numbers–34,945. CDC reported that cases were ~4% more than in 2018, and the geographic distribution of areas with a high incidence of Lyme appears to be expanding based on data reported to National Notifiable Disease Surveillance System (NNDSS). The number of counties with an incidence of ≥10 confirmed cases per 100,000 persons increased from 324 in 2008 to 432 in 2019. 

Reporting Delay Explained  Final Lyme disease case numbers are usually reported in the fall of the next year (for 2019, should have been reported in 2020). The CDC has responded to LDA inquiries over time that reporting was delayed due to the pandemic and thus to shortages of resources/personnel at many government levels, which was no surprise to anyone following the numbers’ delay.  CDC also had a note on the reporting page that “Due to the coronavirus disease 2019 (COVID-19) pandemic, data from some jurisdictions may be incomplete.” 

Past Estimates of Underreporting  In the past,  CDC has reported that only 10% of cases are actually reported─ that translates into 349,450 actual new Lyme cases in the US in 2019.  However, in 2021, the CDC announced that  “A recently released estimate based on insurance records suggests that each year ~ 476,000 Americans are diagnosed & treated for Lyme disease(1,2). ” Prior Lyme estimates based on claims data had indicated “~300,000 people get Lyme disease  each year.”  It appears clear from the number of patients culled from insurance data as being diagnosed and treated annually for Lyme disease in the U.S. that cases are vastly under-reported. 

  1. Schwartz AM, Kugeler KJ, Nelson CA, et al. Use of Commercial Claims Data for Evaluating Trends in Lyme Disease Diagnoses, United States, 2010-2018Emerg Infect Dis. 2021;27(2).
  2. Kugeler KJ, Schwartz AM, Delorey M, et al. Estimating the frequency of Lyme disease diagnoses —United States, 2010-2018Emerg Infect Dis. 2021;27(2).

LDA NOTE: The State of Hawaii does not require reporting of Lyme disease. The State of New York estimates the Lyme numbers in many counties and those numbers are not permitted to be entered into CDC reported case numbers. Massachusetts changed their reporting system and their numbers on paper have dramatically dropped in the past few years, moving them out of the top 15 states.  To see more states that have changed reporting of Lyme disease over time see  LDA Lyme Cases Map Page

Top 15 States  The LDA has ranked the top 15 states based on the CDC total reported Lyme case numbers for 2019 below. This ranking should not be construed to mean that other states do not have reported Lyme cases. They do have reported cases,  Click here for all states, but often patients cannot get diagnosed and/or treated in states that CDC considers “low incidence” states, because  doctors in low incidence states are often either afraid to diagnose Lyme or do not understand that surveillance criteria are not meant as diagnostic criteria.  Read about Diagnosis by Geography

LDA State Ranking by Reported CDC Lyme Cases

 State RankingReported CasesActual Cases (10x = actual cases)
1Pennsylvania899889980
2New York424342430
3New Jersey361936190
4Wisconsin217821780
5Maine216721670
6New Hampshire171017100
7Minnesota152815280
8Maryland141714170
9Connecticut123312330
10Virginia119911990
11Vermont106410640
12Rhode Island9719710
13West Virginia8858850
14Delaware6416410
15Ohio4674670




Bill to Help Children with Lyme Introduced in House of Representatives

Congressman Chris Smith
NJ Congressman Chris Smith

May 27, 2021 –Today, during May Lyme Disease Awareness Month, Congressman Christopher Smith (NJ-4-R) introduced a bill which could change the way our children with Lyme disease have been treated for decades.  Co-sponsors are  new Lyme Caucus Co-Chair, Rep. Henry Cuellar (TX-28-D), Lyme Caucus Member Rep. Bill Posey (FL-8-R),  Rep. Josh Gottheimer (NJ-5-D),  and Rep. Brian Fitzpatrick (PA-1-R).  The bill, “Children Inflicted by Lyme Disabilities Act 2021,” or “CHILD Act 2021” will amend the Individuals with Disabilities Education Act (IDEA) by adding  “including Lyme disease and other tick-borne diseases” in the Individuals with Disabilities Education Act ( IDEA) after “other health impairments.”

The purpose of the bill is “To amend the Individuals with Disabilities Education Act (IDEA to recognize more clearly that Lyme disease can cause disabilities that affect the education of children and to enhance educational services and related services for children with Lyme disease and other tick-borne diseases and for other purposes.”

The CDC now estimates that 476,000 people in the US each year are diagnosed and treated for Lyme disease (link for more info.).  Children are at some of the highest risk of acquiring Lyme disease− ages 0-19 years represented 29% of reported Lyme cases from 2001-2017 (link for more info.).  After a course of treatment, 15-20% or more of patients have long term symptoms.  

Children can have manifestations including cognitive impairment, mental confusion, memory loss, headaches, difficulty concentrating, speech difficulty, visual and hearing problems, dizziness, mood swings, outbursts, depression, sleep disturbance, OCD, and seizure activity, all of which affect their educational experience.

Lyme Disease Association (LDA) President Pat Smith had this to say about the introduction of the bill: “Students with Lyme disease face so many problems in their lives−out of school getting proper medical care and in school trying to overcome the obstacles that Lyme disease presents them with while developing relationships with their peers. These problems take place in a world where there is little understanding of the devastating physical, mental and emotional toll of Lyme disease. In my many years as a board of education member, I was called upon to advocate for these children in my own and other districts. Passage of this bill would perhaps go a long way to level the playing field for parents battling the bureaucratic educational system to get help for their children in that arena.”

LDA Scientific & Professional Advisory Board member Al Tagliabue, MEd (Sp. Ed), MEd (School Adm), a retired Director of Personnel and Community Services of the Jackson, NJ, School District has helped the LDA with children’s school issues for 25 years. He commented  about today’s introduction, ”I hope this bill will help both parents and professionals better understand the insidious nature of Lyme disease as well as the wide variety of educational challenges it presents for students.”

The Lyme Disease Association will be asking for help passage of this bill in the future. 

WHAT LDA HAS DONE FOR CHILDREN: For decades, the Lyme Disease Association Inc. has been working with parents of children who have severe Lyme manifestations which interfere with cognitive and physical abilities to receive an appropriate education, since schools have not generally understood the magnitude of the problem. The LDA has provided programs for teachers, students, school nurses, and psychologists. LDA has a Professional Advisory Board member who is a retired special education school administrator.  LDA President, Pat Smith, a former Board of Education Member, acted as a child advocate in the schools for students with Lyme disease. She met with teachers, special service teams, and administrators, and has worked with attorneys, and appeared in court with parents to try to resolve these issues. She has also in-serviced school staff and provided educational in-school programs for students on Lyme and TBDs as well as developed the LDA’s ABC’s of Lyme Disease pamphlet written especially for parents and educators. The pamphlet contains information from experts on the impact of Lyme disease on children’s education, and hundreds of thousands have been distributed. The LDA also has Tickles, a prevention video, in the “Lyme, Kids and Schools” website section (link for more info.).

Click here for Bill Text