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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




504, IDEA & IEPs by Alfred C. Tagliabue, M. Ed.

Note: 6 pages total. Scroll or Hover at bottom to Click page numbers.

504article11-04_Tagliabue




House Approves Chris Smith Amendment Increasing Lyme Research by $4M

News from Congressman Chris Smith website:

Congressman Chris Smith
Congressman Chris Smith

The House of Representatives passed an amendment authored by Rep. Chris Smith (R-NJ) which increases Lyme disease research funding by $4 million, for a total of $20 million, at the Centers for Disease Control and Prevention (CDC) for fiscal year 2021. The amendment, which passed July 30th, has been co-sponsored by lead Democrat, Rep. Collin Peterson (MN), and Reps. Elise Stefanik (R-NY), Antonio Delgado (D-NY), Max Rose (D-NY), and Raul Grijalva (D-AZ).

Rep. Smith said, “Just three years ago CDC’s Lyme budget was only $11.7 million. The increase in funding achieved through my amendment will help CDC develop better diagnostic tests for Lyme, expand tick surveillance activities across the US and strengthen the federal government’s overall strategy to combat Lyme.”

In the news release, Pat Smith, LDA President was quoted: “Rep. Smith’s funding amendment is an important step in the fight to reign in Lyme disease. The rising case numbers and increasing spread of tick-borne diseases are alarming and require a sustained focus from Congress to try to control this epidemic. We are grateful to Congressman Smith for his continued dedication to this effort and his success along with his colleagues to acquire an additional $4M in funding for Lyme disease and other tick-borne diseases. In these difficult times for our country, that is an outstanding accomplishment.”

Earlier in July, the House agreed to another Smith Lyme Disease amendment to mandate a GAO investigation into possible use of ticks in a Department of Defense bioweapons program. Read more on LDA website

Rep. Smith introduced the House version of the recently enacted law, the TICK Act  (Ticks: Identify, Control, Knockout Act—HR 3073), which implements a national strategy to fight Lyme disease and authorizes an additional $150 million to increase funding for Lyme research, prevention and treatment programs.  Senator Susan Collins (ME) had introduced the Senate version.  Read more on LDA website

Read Rep. Chris Smith’s full news release here

Read history of the amendment on LDA website

 

 

 




Series of Amendments Go Through Process to Increase Lyme/TBD CDC $$$

Congressman Chris Smith at podium
Congressman Christopher H. Smith (NJ-4)

In a complex government process, the Tick Act–a bill that provides funding for Vector-Borne Diseases including Lyme– was not fully funded according to the Committee report on HHS. The Committee report has 16M for Lyme and 38M for vector-borne diseases.

(NOTE: as LDA has mentioned in prior information on the Tick Act, it is for Vector-Borne Diseases of which TBD are only a part). 

To address the issue, Congressman Chris Smith (NJ-4) developed an amendment to raise that funding for TBD, which was co-sponsored by Congressman Collin Peterson (MN). During amendment development, the President’s budget request for 2021 was examined, which asked for $14 million increase over 2020 for vector-borne diseases.  Suggested funding levels in the Tick Act for vector-borne diseases were also examined. The LDA provided input into that amendment process and concurred with an additional $11.4M to be asked for on top of the $2M increase in appropriations asked for in the report. Congressmen Smith and Peterson submitted the amendment for $11.4M, but Congressman Delgado (NY) also submitted an amendment, asking for $4M. The Congressmen agreed on $4M in an amendment Smith et al # 289.

Amendment # 289. Smith, Christopher (NJ), Peterson (MN), Stefanik (NY), Delgado (NY), Rose, Max (NY) does the following:  Redirects $4 million from General Departmental Management at the Department of Health and Human Services to Emerging Zoonotic and Infectious Diseases at the Centers for Disease Control, for Lyme Disease and other Vector-Borne Diseases.

House Report 116-461, the Rules Committee Report on HR 7167, with amendments made in order, including the Chris Smith amendment. A description of the Smith amendment (289) is on page 33 of the pdf, and the actual language is on page 365 of the pdf. 

Listen to the video below of Congressman Smith pitching the amendment to the committee.

 




GAO Investigation of Ticks/Vector-Borne Agents’ Biowarfare Experiments Passes House

Kris Newby, Author, Bitten
Kris Newby, Standford University Science Writer, “Bitten”

Update July 29, 2020:  The Bill and passed amendments such as this one (below) has now moved to the conference committee where the House and Senate will work to decide what language goes into the final product. The LDA provided input into the amendment language and has been working to get Senators to champion the inclusion of this GAO Investigation Amendment into the final bill.

Said LDA president Pat Smith: “We thank Congressmen Smith & Peterson for championing this investigation. Lyme and tick-borne diseases (TBD) 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. Perhaps it may uncover clues to help stop this epidemic of tick-borne diseases.” 

 
Rep. Smith (NJ-04) NDAA FY 2021 Lyme Disease Amendment Floor Speech
Jul 21, 2020


 


Congressman Chris Smith
Congressman Christopher H. Smith (NJ-04)

July 23, 2020:  The House voted this week to pass a number of amendments to the NDAA, National Defense Authorization Act, including a Chris Smith/Collin Peterson amendment, # 587 —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.  (https://rules.house.gov/bill/116/hr-6395).

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.

Said LDA president Pat Smith: “Lyme and tick-borne diseases (TBD) 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.”  She added, “There is the possibility that any uncovered information could lead to facts which could shed light on the current epidemic of Lyme and other TBD and help develop solutions. We thank Congressmen Smith and Peterson for their 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 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.

In 2019, a similar amendment was introduced and passed the House unanimously but there was no senate support for it.

The Lyme Disease Association (LDA) has been encouraging Lyme advocates across the country to contact both of their US Senators to champion and support this amendment. It is being heard in the Senate this week. LDA thanks those leaders who have made calls and sent emails to garner support. 

More Information

New Jersey Globe: House passes Chris Smith measure to probe if government turned ticks into bioweapons

Chris Smith website: Chris Smith’s Lyme Disease Amendment Passes House, Tells DOD IG to Investigate the ‘Bioweaponization’ of Ticks

NJ101.5.com: NJ Rep. Chris Smith — did our government release diseased ticks? 

MoreMonmouthMusings.net: House passes Smith’s Amendment which could lead to a Lyme disease cure


Here is a very similar Smith amendment that passed the House unanimously in 2019 but did not make it through the Senate.

https://lymediseaseassociation.org/government/urgent-help-needed-for-biowarfare-investigation/


Kris Newby’s Bitten: LDA book review 

All about Kris Newby, the book and access some of the documents used in book. 

 




Lyme Disease Needs Your Congressmen to Sign Onto Letters NOW!

Rep. Chris Smith Rep. Chris Smith
Rep. Collin Peterson Rep. Collin Peterson

ISSUE

At this time the Lyme Disease Association, Inc. is asking you to contact your Congress Member to ask him/her to sign on to 2 important letters from the US House Lyme Disease Caucus.

These bipartisan letters provide details that the Lyme Caucus is asking the 2 Appropriations Committees to include in their reports on FY 2021 Appropriations. This language will help provide direction for the monies and was developed with input from Lyme/TBD advocates.

LETTER LHHS Appropriations Committee (sign-on deadline 3/10)

LETTER DoD Appropriations Committee Lyme/CDMRP (sign-on deadline 3/13)

INSTRUCTIONS

 1. Determine Who Your Congress Member Is

Click on “Find Your Rep” box below

Type in zip code (your Member or a Member who serves your group’s area, your work area, etc.)

FIND YOUR REP

2. Congress Members Already Signed on Letter as of March 6, 2020/ Do Not Contact

Christopher H. Smith (NJ), Caucus Co-Chair
Collin Peterson (MN), Caucus Co-Chair
Antonio R. Delgado (NY)
Brian Fitzpatrick (PA)
Tom Malinowski (NJ)
Chellie Pingree (ME)
Bill Posey (FL)
Max Rose (NY)
Elise M. Stefanik (NY)
Jennifer Wexton (VA)
Vicky Hartzler (MO)

3. Email or Call Your Congress Member’s DC office.

A. Below is an example of what you need to say to your Congress Member. Here are some examples of how you can identify yourself:  I am a Lyme patient, family member, friend of, person concerned about Lyme, doctor, Lyme group leader, etc.  

B. Cut & paste the red text below into an email to your Congress Member OR call and say the following verbally over the phone to your Congress Member: 

Dear Congress Member, 

I ask that you please sign onto the two letters from the bipartisan House of Representatives Lyme Disease Caucus – co-chairs Christopher Smith (NJ) and Collin Peterson (MN) – to the LHHS Appropriations Committee and to the DoD Appropriations Committee (Lyme/CDMRP). The important language in these letters will help Lyme patients across the country. Here are links to the draft letters:

Please call or email Kelsey Griswold Kelsey.Griswold@mail.house.gov at the Office of Christopher Smith for information or to have your signature added.  Thank you so much for your support on this important issue affecting hundreds of thousands of people in the US.

Sincerely,  INSERT YOUR NAME, HERE

C. PLEASE NOTE: You are NOT supposed to email Kelsey Griswold. You are to instruct your Congress Person to email her directly. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 




President’s FY21 Budget Request Includes Increase for Vector-Borne Diseases

The White House released the Fiscal Year 2021 budget proposal which includes a $14 million increase compared to the 2020 enacted level that focuses on tick-borne diseases.

Excerpts from Budget of the United States Government, Fiscal Year 2021:

  • “Prioritizes Critical Health Research and Supports Innovation” … “NIH would continue to address the opioid epidemic and emerging stimulants, make progress on developing a universal flu vaccine, prioritize vector-borne disease research, and support industries of the future.”
  • “Advances Vector-Borne Disease Prevention and Control. The threat of mosquito and tickborne diseases continues to rise in the United States. Cases of tick-borne diseases, such as Lyme disease and Rocky Mountain spotted fever, affected nearly 60,000 Americans in 2017. The Budget includes $66 million for CDC’s vector-borne disease activities, a $14 million increase compared to the 2020 enacted level which focuses on tick-borne diseases. The Budget also invests in NIH research to improve the Nation’s understanding of vector-borne diseases.”

The White House also released a fact sheet titled Protecting our Nation’s Health and Wellness reinforcing the prioritization of critical health research and advances in vector-borne disease prevention and control. Congress will review and vote on the budget proposal within the coming weeks.

Click here to view Budget of the United States Government, Fiscal Year 2021

Click here to view supplementary document Protecting our Nation’s Health and Wellness




House Confirms Fiscal Year Spending 2020 for Lyme & Other Vector-Borne Diseases

The 116th Congress House Committee on Appropriations submitted a report in explanation of bill H.R. 2740, the Omnibus that funds Health and Human Services (HHS) including the National Institute of Health (NIH) and the Centers for Disease Control (CDC), and outlines the final legislative language and designation of funds for vector-borne diseases, including Lyme disease, for fiscal year ending September 30, 2020.

Highlights from the House Explanatory Statement include:

  • The Committee encourages NIAID to intensify research and development on Lyme and other tick-borne diseases, including research that will increase understanding of the full range of processes that cause Lyme disease infection. This should include research on the physiology of Borrelia burgdorferi and Borrelia mayonii, including the mechanisms of possible persistent infection, potential treatment protocols for extended or long-term symptoms attributed to Lyme and other tick-borne diseases, and development of more sensitive and accurate diagnostic tests for Lyme and tick-borne diseases, including next generation polymerase chain reaction (PCR) and new testing methodologies such as proteomics and metabolomics. The Committee directs NIAID to support research on the heightened incidence of Lyme Disease and vector-borne diseases due to global warming.
  • The Committee encourages NIH to improve early diagnosis and treatment of Lyme and other tick-borne diseases (TBD) to prevent the development of late stage disease and more serious and longer-term disability, but also intensify research on diagnosis and treatment of late stage and chronic disease. In addition to development of highly sensitive and specific diagnostics for all stages of disease, a goal should be to develop diagnostics with appropriate sensitivity and specificity for the detection of infection. Treatments also should be developed for all stages of Lyme and other TBD, determining optimal combinations of new candidate or older drugs and exploring novel combinations.

A statement from a Congressional spokesperson further clarifies that, “The agreement includes an increase and encourages CDC, in coordination with NINDS and NIMH, to include in its surveillance the long-term effects. CDC is also encouraged to coordinate with NIH on publishing reports that assess prevention, treatment, diagnostic advancements, and links between tick-borne disease and psychiatric illnesses. CDC is encouraged to focus efforts in endemic areas as well as areas not yet considered endemic.”

Thank you to Congressman Chris Smith (NJ-4) for working with LDA to get some of this language included. Thank you to other advocates and legislators who also provided input into the process.

The CDC received a $2,000,000 increase for Lyme disease.

Click here to view the full H. Rept. 116-62 Explanatory Statement

Click here to view HR 1865 Division A 

 




Asking Congress to Stamp Out Lyme Without Using Federal Dollars

State CapitalCongressman Antonio Delgado (NY) introduced the Stamp Out Lyme Disease Act with Original Co-sponsors Christopher Smith (NJ), Collin Peterson (MN), and Lee Zeldin (NY), a bipartisan effort to raise funds for Lyme disease research.

The bill provides an easy way for the public to contribute to research for Lyme disease and related tick-borne diseases within the National Institutes of Allergy & Infectious Diseases (NIAID), NIH. Monies raised by stamp sales will not affect the level of appropriations or other funding that NIAID would be able to receive in any given year.

The US Postal Service will issue a “semipostal stamp” for a period of 6 years. It falls under Title 39, section 416(a)(1) United States Code, which addresses other stamps for other conditions that have been issued.

The bill has upgraded findings including some from the HHS Tick-Borne Disease Working Group 2018 report to Congress, but the text is essentially the same as the 2017 bill which LDA worked on with then-Congressman Faso (NY).

The LDA urges all of Congress to support this bill which would provide much-needed monies for research to help unlock the secrets of Lyme disease.

Said LDA President Pat Smith “The Stamp Out Lyme Disease Act introduced by Congressman Delgado enables Congress to provide an opportunity for much-needed funds to be raised for Lyme and other tick-borne diseases research without adding to the federal government’s financial burden. It enables individuals who want to support Lyme research–so that patients can get proper diagnosis and treatment–to do so without a strain on their budgets and without an unnecessary expenditure of time. Buy a Lyme stamp, help save a life! It’s a win-win situation.”

Click Here to View the Stamp Out Lyme Disease Act 




URGENT: The Tick Act Needs Your Help Now!

ActNowTO: Advocates/Patients
FROM: Lyme Disease Association, Inc. Pat Smith, President, 11-20-19
RE: Urgent & Immediate Help Needed
(Click for easy Steps to Take or See Below)

ISSUE: On October 31, the Senate Tick Act (Collins, ME) was passed out of the Senate HELP Committee; however, it was a different bill than the one that was originally submitted to the Senate Committee that many Lyme groups supported. The HELP committee replaced it in its entirety with a Manager’s Amendment, submitted “in the nature of a substitute,” which still keeps the same bill number, S-1657, and it was renamed the Kay Hagan Tick Act.

The Senate bill has always been a vector-borne disease bill, meaning that mosquito-borne diseases such as Zika and West Nile virus, as well as other vector-borne diseases, are included and eligible to receive monies. There were safeguards in the original Senate bill that would have ensured that Lyme received the funding it warrants, for example, monies would be allocated proportionately according to disease burden in the US. Those safeguards have been removed. The LDA was not aware of the bill substitution and now has been urgently working to assess−before it goes to the full Senate− what these significant bill changes mean, and the potential impact on what the bill does.

Explanation of Tick Act Changes From the Lyme Disease Association & How To Help


LDA ASSESSMENT & ACTION: We need to take several actions to try to minimize the impact of the changes on the Senate bill.  LDA is working with Senator Susan Collins’ office and with Congressman Chris Smith’s office to try to rectify this language situation to provide necessary safeguards to ensure Lyme will get its appropriate share of the funds that are included in this new Senate bill.

WHAT CAN BE DONE BY YOU: The House version of the Tick Act, HR3073 (Smith, NJ) retains the original language that the Senate bill used to have. We want to ensure that the Smith House version of the Tick Act gets more co-sponsors so we have another possible route to passage. We need your help now with the action below.

ACTION FOR YOU TO TAKE: We have provided the list of current co-sponsors of the Smith House bill, HR 3073, below, which contains the original Senate language. If your Congressman/woman is NOT on the co-sponsor list, we need you to contact him/her immediately.


STEPS TO TAKE

*

Step #1: Click here to review the current list of co-sponsors of the HR 3073, Tick Act, in the House of Representatives. If your Congressperson is NOT on the current co-sponsor list:

  • Go to Step #2
  • If your Congressman IS on the list as a co-sponsor, but you would like to call another from your state who is not on the list Go to Step #2

BlueEmailBlackPhStep #2: If you DO NOT see your congressperson’s name on the list above, please visit this website to locate his/her contact information, and then:

  • CALL OR EMAIL YOUR CONGRESSPERSON per the instructions directly below.
  • WHAT TO SAY TO YOUR CONGRESSPERSON: Contact your House of Representatives’ offices and let them know you want them to co-sponsor HR 3073, Tick Act. Explain that it is important that the government develops a strategy for Lyme and tick-borne diseases and authorizes monies to fight this nationwide problem. About 427,000 new cases of Lyme disease occurred in 2017 alone, 20 different tick-borne diseases and conditions are now found in the US, and half of U.S. counties have already been found to harbor ticks that transmit Lyme disease. Thank him/her.
  • If your group serves more than one congressional district, contact all Members of Congress in the area you serve with the same message. 

LINKS TO THE TICK ACT BILLS:

To see the House bill, HR 3073, Tick Act, click here.

To see the original version of Senate bill, S-1657, click here. 

To see the new version of Senate bill, S-1657/Kay Kagan Tick Act, that was passed through the HELP Committee, click here

Thank You!