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. 

 




Rep. Smith Questions COVID-19’s Impact on Lyme Patients

On April 9th, Rep. Chris Smith sent a letter to Health and Human Services (HHS) Secretary Alex Azar and the National Institute for Allergies and Infectious Disease (NIAID) Director, Dr. Anthony Fauci, thanking them for their tireless efforts to address the Coronavirus outbreak as well as expressing his concerns about Lyme disease sufferers and their potential to be especially vulnerable to COVID-19.

Smith wrote, “As you know, my home state of New Jersey has been ravaged by COVID-19—as of April 9 there have been 51,027 confirmed positive cases and 1,700 have tragically lost their lives. Thousands more have lost their lives across the entire Tri-State area which also includes New York and Connecticut. I find this outbreak especially concerning when I consider the countless individuals who live in this region who also suffer from Lyme Disease, which also considers the Tri-State Area as a ‘hotspot.’”

The letter highlighted a 2018 HHS Tick-Borne Disease Working Group (TBDWG) report to Congress indicating that there are approximately 300,000 new cases of tick-borne disease annually in the US. Smith warned this number is likely higher and a press release from his office states that an estimated 40,000 of these cases originate in New Jersey.

“I remain deeply concerned about what impact COVID-19 and the Coronavirus outbreak will have on the countless Americans suffering from Lyme Disease and other related coinfections,” Smith continued. “Does the National Institutes of Health believe Lyme Disease, and other tickborne diseases, are considered underlying conditions which put individuals at higher risk for COVID-19?”

Since 1993 Smith has consistently worked to address the needs of the Lyme disease community including authoring comprehensive amendments and legislation such as the Lyme Disease Initiative Act of 1998 and more recently, The Tick Act, which creates a “new whole-of-government” national strategy to combat Lyme and other tick-borne diseases.

Read Congressman Smith’s letter to NIH and HHS. 

Read a Press Release about Congressman Smith’s letter.




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 

 




President Signs Tick Act into Law

On December 20, 2019, President Trump signed the Kay Hagan Tick Act into law as part of an end-of-year spending package that had passed both Houses.
 
The bill had been introduced by Rep. Chris Smith (R-NJ) in the House and by Senator Susan Collins (R-ME) in the Senate. The bill language was changed in the Senate before passage out of the Senate HELP Committee. That language was changed slightly again at the House level before being incorporated into the end-of-year Appropriations bill.  The good news is, Lyme will get some monies for the development of a vector-borne disease national strategy and also for CDC grants to States to help provide funding for surveillance and other vector-borne diseases issues.  The amount given for tick-borne diseases will not be known until the FY2021 appropriations process is complete since the bill includes all vector-borne diseases, mosquito, and tick-borne.
 
Text of Tick Act Signed by President
 
Click here for Congressman Smith’s News on Tick 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!




List of Current Co-Sponsors of HR 3073, Tick Act

 

If you DO NOT see your congressperson’s name on list below, or for more info, Return to Tick Act Article & Steps to Take 

CosponsorDate Cosponsored
Rep. Smith, Christopher H. [R-NJ-4]Sponsor
Rep. Peterson, Collin C. [D-MN-7]Original Cosponsor
Rep. Walorski, Jackie [R-IN-2]6/5/2019
Rep. King, Peter T. [R-NY-2]6/19/2019
Rep. Davis, Rodney [R-IL-13]6/19/2019
Rep. Fitzpatrick, Brian K. [R-PA-1]6/19/2019
Rep. Posey, Bill [R-FL-8]6/19/2019
Rep. Vela, Filemon [D-TX-34]6/19/2019
Rep. Norton, Eleanor Holmes [D-DC-At Large]6/19/2019
Rep. Stefanik, Elise M. [R-NY-21]6/21/2019
Rep. Bilirakis, Gus M. [R-FL-12]6/21/2019
Rep. Upton, Fred [R-MI-6]6/21/2019
Rep. Reed, Tom [R-NY-23]6/21/2019
Rep. Gonzalez-Colon, Jenniffer [R-PR-At Large]6/21/2019
Rep. Thompson, Glenn [R-PA-15]6/21/2019
Rep. Yoho, Ted S. [R-FL-3]6/21/2019
Rep. Fortenberry, Jeff [R-NE-1]6/21/2019
Rep. Mitchell, Paul [R-MI-10]6/21/2019
Rep. Rogers, Mike D. [R-AL-3]6/21/2019
Rep. LaMalfa, Doug [R-CA-1]6/21/2019
Rep. Carter, John R. [R-TX-31]6/21/2019
Rep. Katko, John [R-NY-24]6/21/2019
Rep. Hunter, Duncan D. [R-CA-50]6/21/2019
Rep. Lipinski, Daniel [D-IL-3]6/24/2019
Rep. Gibbs, Bob [R-OH-7]6/24/2019
Rep. Cole, Tom [R-OK-4]6/24/2019
Rep. Rutherford, John H. [R-FL-4]6/25/2019
Rep. Hagedorn, Jim [R-MN-1]6/26/2019
Rep. Kuster, Ann M. [D-NH-2]6/26/2019
Rep. Welch, Peter [D-VT-At Large]6/27/2019
Rep. Langevin, James R. [D-RI-2]6/28/2019
Rep. Payne, Donald M., Jr. [D-NJ-10]6/28/2019
Rep. Pingree, Chellie [D-ME-1]7/9/2019
Rep. Steube, W. Gregory [R-FL-17]7/10/2019
Rep. Pocan, Mark [D-WI-2]7/10/2019
Rep. Hartzler, Vicky [R-MO-4]7/12/2019
Rep. Marshall, Roger W. [R-KS-1]7/12/2019
Rep. Chabot, Steve [R-OH-1]7/18/2019
Rep. Norcross, Donald [D-NJ-1]7/23/2019
Rep. Miller, Carol D. [R-WV-3]7/23/2019
Rep. Maloney, Sean Patrick [D-NY-18]8/16/2019
Rep. Blunt Rochester, Lisa [D-DE-At Large]8/30/2019
Rep. Delgado, Antonio [D-NY-19]9/17/2019
Rep. Himes, James A. [D-CT-4]10/4/2019
Rep. Rose, Max [D-NY-11]10/4/2019
Rep. Rice, Kathleen M. [D-NY-4]10/17/2019
Rep. Sarbanes, John P. [D-MD-3]10/23/2019
Rep. Golden, Jared F. [D-ME-2]10/23/2019
Rep. Cooper, Jim [D-TN-5]10/30/2019
Rep. Lofgren, Zoe [D-CA-19]11/8/2019
Rep. Tonko, Paul [D-NY-20]11/8/2019
Rep. Malinowski, Tom [D-NJ-7]11/8/2019
Rep. Trone, David J. [D-MD-6]11/18/2019
Rep. Olson, Pete [R-TX-22] 11/26/2019
Rep. Craig, Angie [D-MN-2]12/03/2019
Rep. Pappas, Chris [D-NH-1]12/04/2019
Rep. Walberg, Tim [R-MI-7]12/04/2019
Rep. Hayes, Jahana [D-CT-5]12/05/2019
Rep. Gottheimer, Josh [D-NJ-5]12/09/2019
Rep. Soto, Darren [D-FL-9]12/09/2019
Rep. Kind, Ron [D-WI-3]12/09/2019




Important Information You Need to Know About the Tick Act

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

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 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 the name was changed to the Kay Hagen Tick Act.

The Tick Act bill is NOT and was NOT ever a specific Lyme & tick-borne disease (TBD) bill. It is 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 will get money. However, there were safeguards in the original bill that would have made clear in the bill’s intent that it was focused on Lyme/TBD. Those safeguards have been removed. The LDA was not aware of the bill substitution and found out almost a week after passage through committee and has spent time assessing the impact and weighing actions to take. The new bill substitute will now be presented to the full Senate & its new language will have a significant impact on what the bill does.

1. Language in original Bill: In the 2 authorization of monies sections, the bill says: “amounts appropriated shall be allocated under this section to diseases in a manner that proportionately matches the disease burden of these diseases in the US, which shall be reassessed and adjusted annually.”

The language above in quotes was removed in both areas of the new bill substitute.

Purpose of Language: “Burden of disease” means the amount/impact of each disease covered by the bill. The higher the disease burden, the more money it would get—annually reassessed. The language was a safeguard we had put in to ensure Lyme disease received the share of the monies it deserved. For example, in 2017, Lyme had 42,700+ CDC reported cases, (427,000 if number adjusted for underreporting by a factor of 10). None of the other diseases were even close but Lyme could receive less money, depending on the strength of their lobbying/connections they have.

Problem: The major safeguard for Lyme getting an appropriate share of monies has been removed. Zika and West Nile, which have received disproportionate funding for years, could get a large percent of the monies as could lesser burden tick-borne diseases.

• Included in the language removal above is the phrase “diseases in the US.” Removing that has opened the door to monies going toward other vector-borne and tick-borne diseases outside the US, including for vaccine studies, something which has already occurred in other government programs, while US TBD continue to suffer from lack of funding.
_______________________________________________________________________________________________________2. Language in original Bill: The word Lyme was included 30 times in the original bill.
The word Lyme appears once in the new bill substitute, in the one line purpose.

Purpose of Language: The repeated use of the word Lyme provided an emphasis on that disease and bolstered the intent of the original legislation. It was primarily a Lyme bill.

Problem: “Lyme” now only appears in the one line, Purpose, which is not included in the body of the bill so does not really carry the weight of the bill. In some places where “Lyme” was removed, it was replaced with “vector-borne diseases, including tick-borne diseases.” _______________________________________________________________________________________________________
3. Language in original Bill: Original bill designates a section “National Strategy and Regional Centers of Excellence in Tick & Vector-Borne Diseases.

New bill substitute designates the section “National Strategy and Regional Centers of Vector-Borne Diseases.”

Purpose of Language: The addition of “Tick and” to the Centers’ title reinforced the intent for the Centers to address Lyme and tick-borne diseases.

Problem: These Centers of Excellence have been in existence since 2017, not established through legislation−the purpose has been primarily vector-borne diseases, i.e., mosquito-borne diseases. The centers would now be “codified” through this legislation, which has no safeguards for distributing monies through the burden of disease nor does the bill even have a strong “intent” toward Lyme disease. Also, the original bill included under the Centers’ section-specific strategies to address Lyme/TBDs, strategies which would help to solve the problems of the past. Now only general strategies applicable to VB are included.

Although there are other changes, we are trying to have the main safeguard for Lyme funding to be put back in the Senate bill, in particular, the phrase “amounts appropriated shall be allocated under this section to diseases in a manner that proportionately matches the disease burden of these diseases in the US, which shall be reassessed and adjusted annually,” or a comparable safeguard(s). That can be done if the bill goes to the floor of the Senate where amendments can be offered. However, we understand this bill is being “hotlined,” called up to pass without a vote, by unanimous consent, unless a Senator objects. We are working with Senator Collins’ office to try and reinstate safeguards for Lyme into the Senate version.

ACTION NEEDED NOW!

We are continuing to work with Congressman Smith’s office since the House of Representative’s version of the Tick Act, HR 3073 (Smith NJ), still contains ALL the safeguard language that the original Senate bill had in it but which has now been removed by the Senate.

We want to ensure that the HR 3073, Tick Act, gets more House co-sponsors on board so that we have another possible route to passage of the Tick Act. We need your help now to get more co-sponsors on the House bill, HR 3073. Click HERE for actions you can take to call your Congressperson.

LINKS TO THE TICK ACT BILLS’ LANGUAGE:

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

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

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