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!




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.




URGENT: Your Help Needed for Inspector General Investigation

TO: Lyme Disease Advocates & Patients ActNow
FROM:
Lyme Disease Association, Inc. Pat Smith, President, 8-15-19
RE: Urgent & Immediate Help Needed to Investigate Information Which Could Lead to Helping to Solve Tick-Borne Diseases Problem

ISSUE: The debate over the prevalence of Lyme disease and whether it exists in a chronic form has raged for decades. Kris Newby’s well-researched book, “Bitten,” provides documented evidence that the properties of the Lyme pathogen itself and its ally, the tick, appear to be part of our nation’s biowarfare studies. The suspicions of disease sufferers, their advocates, and treating physicians deserve investigation.

WHAT GOOD WOULD AN INVESTIGATION DO? Results of an investigation could possibly:
  • Change how tick-borne diseases are viewed.
  • Change attitudes about patients.
  • Have an impact on treatments.
  • Have an impact on tick control.
  • Lead to increased federal funding.

WHAT CAN YOU DO TO HELP?


BACKGROUND: Swiss-American scientist Willy Burgdorfer is acclaimed for identifying the spirochetal bacteria which causes Lyme disease. Indeed, the pathogen bears his name, Borrelia burgdorferi. Yet, as the author discloses through filmed interviews and archival reviews, there were other aspects to Willy’s research. Employed by the US government and headquartered at Rocky Mountain Laboratories, Burgdorfer was enmeshed in biological warfare projects.  Ms. Newby discusses his work in Switzerland for the American government which led to the identification of a new strain of Rickettsia, a pathogen, if crossed with Borrelia, might well complicate treatment and thus be a candidate for biowarfare.  Interviews by Ms. Newby with American researchers on the topic of the Rickettsia, dubbed “the Swiss agent” by Dr. Burgdorfer, did not shed any light on the mystery pathogen whose existence seems to be buried in the past.

Ms. Newby’s discovery of tick drops and the experimental release of ticks document ongoing biowarfare research and questions the consequences if studies go awry. The prevalence of new diseases and the expansion of tick territories are examined in the context of newly revealed government studies.

CONGRESSIONAL ACTION TAKEN TO DATE: The Lyme Disease Association has kept Congressman Christopher H. Smith (NJ) apprised of Lyme disease developments over the decades including the release of the book, “Bitten,” and provided him with a pre-released copy along with our grave concerns that the quality of material and level of research merited immediate action. He read the book and took action that included educating as many in Congress as possible, which culminated with the US House of Representatives voting July 11, 2019, to pass Smith’s Amendment #355 to the National Defense Authorizations Act (NDAA) for Fiscal Year 2020 (HR 2500), directing the Inspector General of the Department of Defense to “conduct a review of whether the Department of Defense experimented with ticks and other insects regarding use as a biological weapon between the years of 1950 and 1975. HR2500, as amended, passed the House on July 12, 2019. View Amendment #355

View Congressman Smith’s Floor Speech on the Amendment

WHO OPPOSES AN INVESTIGATION TO UNCOVER THE TRUTH?: The same entities who claim there is no scientific evidence to support chronic Lyme claim— with little or no evidence— that this is a conspiracy theory perpetuated by advocates and patients. Most of them are the same individuals who have distorted information about the diagnosis and treatment of Lyme disease. They have debunked chronic Lyme disease for decades, despite a vast amount of new research evidence from prestigious institutions on the topic of persistent infection with the Borrelia bacteria after treatment. Like their specious arguments against chronic disease, these critics do not acknowledge nor present any verified opposition to the documents chronicled meticulously by Ms. Newby over five years of visits to the government archives, the Burgdorfer home−including interviews with Dr. Burgdorfer himself, and other places where Dr. Burgdorfer gave some records he did not want the government to have.


HOW CAN YOU HELP?

Here’s What To Do & Say: Contact the Senators offices as explained in STEPS listed below

*Let them know you want him/her to support the Smith Amendment #355 to the National Defense Authorizations Act (NDAA) which requires the Inspector General of the Department of Defense to investigate a possible US biowarfare program involving ticks and other insects that may have contributed to the spread of tick-borne diseases.

*Tell them that the public has a right to know if there was such a bioweapons program and a right to be provided with the details on what, where, and when these weaponized organisms may have been released on an unsuspecting public.

*Explain that there may be information which could help in the fight of tick-borne diseases today, when about 427,000 cases of Lyme disease occurred in 2017 in the US according to the CDC, and about 20 tick-borne diseases and conditions are now found in the US.

Thank him/her.

Please contact Milena@LymeDiseaseAssociation.org with any questions. 

 

URGENT! ACTIONS FOR YOU TO TAKE NOW:
Congress is on recess and many Members are back in their home districts.

STEPS:

Look at the US Senate Armed Services Committee Table Below

1. If there is a Member who is a US Senator from your state

  • Call his/her state office (number in table below) to get a personal meeting with him/her while they are home in-state.

OR

  • If you cannot get a personal in-state meeting with your Senator
      • Set up a meeting with a local office staff member and ask them to teleconference in the appropriate staff member from the Washington, DC office to your meeting.

    OR

  • If you cannot meet with your Senator’s office in-state, call them at the DC office number (in the table below)

After completing the above, please call as many of the remaining offices as possible at the DC number (in the table below).

Skip #2.

 

2. If there is NOT a member from your state

  • Please call as many Armed Services Committee members on the list below, as possible at their DC office number. Ask for whoever is responsible for the National Defense Authorizations Act (NDAA) in that office. The more Senators we contact, the better chance we have of getting an investigation.

 

Tips for How to Contact U.S. Senators

  • A telephone call usually has the most impact. When addressing your U.S. Senator, always refer to them as “Senator (Name)” or “The Honorable (Name)”.
  • When emailing, use the same formality as you would when writing a letter. 
  • When addressing an envelope or letter, always refer to your legislator as “The Honorable (Name)”. For the salutation, write: “Dear Senator (Name),” so your message doesn’t look like junk mail (referenced from sbsb.com).
    • Example:
        • The Honorable (Senator’s Name) 
          United States Senate 
          Washington, D.C. 20510 
  • If your senator is the chairman or ranking member of a committee, type the full title under the senator’s name in the address block. Committee position information is included in the table below. 
  • For more information on how to contact U.S. Senators, visit www.senate.gov OR www.sbsb.com
  • If you have any questions, please contact Milena@LymeDiseaseAssociation.org

 

 

MEMBERS of SENATE ARMED SERVICES COMMITTEE

See above TIPS on how to contact your Senator.

NamePRT-STCommittee PositionDC Office Ph # State Office Ph #Email/Form Contact LinkWebsite
James InhofeR-OKChair, Senate Armed Services(202) 224-4721(918) 748-5111https://www.inhofe.senate.gov/contactwww.inhofe.senate.gov
Jack ReedD-RIRanking Member, Senate Armed Services(202) 224-4642(401) 528-5200https://www.reed.senate.gov/contact/emailwww.reed.senate.gov
Roger F. WickerR-MSMember, Senate Armed Services(202) 224-6253(601) 965-4644https://www.wicker.senate.gov/public/index.cfm/contactwww.wicker.senate.gov
Deb FischerR-NEMember, Senate Armed Services(202) 224-6551(402) 441-4600https://www.fischer.senate.gov/public/?p=email-debwww.fischer.senate.gov
Tom Cotton R-ARMember, Senate Armed Services(202) 224-2353(479) 751-0879https://www.cotton.senate.gov/?p=contactwww.cotton.senate.gov
Mike RoundsR-SDMember, Senate Armed Services(202) 224-5842(605) 224-1450https://www.rounds.senate.gov/contact/email-mikewww.rounds.senate.gov
Joni ErnstR-IAMember, Senate Armed Services (202) 224-3254(515) 284-4574https://www.ernst.senate.gov/public/index.cfm/email-joniwww.ernst.senate.gov
Thom Tillis R-NCMember, Senate Armed Services(202) 224-6342(919) 856-4630https://www.tillis.senate.gov/www.tillis.senate.gov
Dan SullivanR-AKMember, Senate Armed Services(202) 224-3004(907) 271-5915https://www.sullivan.senate.gov/contact/emailwww.sullivan.senate.gov
David PerdueR-GAMember, Senate Armed Services(202) 224-3521(404) 865-0087https://www.perdue.senate.gov/connect/emailwww.perdue.senate.gov
Kevin CramerR-NDMember, Senate Armed Services202-224-2043701-232-5094https://www.cramer.senate.gov/contact_kevinwww.cramer.senate.gov
Martha McSallyR-AZMember, Senate Armed Services(202) 224-2235(602) 952-2410https://www.mcsally.senate.gov/contact_marthawww.mcsally.senate.gov
Rick ScottR-FLMember, Senate Armed Services(202) 224-5274(850) 942-8415https://www.rickscott.senate.gov/contact_rickwww.rickscott.senate.gov
Marsha BlackburnR-TNMember, Senate Armed Services202-224-3344865-540-3781https://www.blackburn.senate.gov/contact_marshawww.blackburn.senate.gov
Josh HawleyR-MOMember, Senate Armed Services(202) 224-6154(816) 960-4694https://www.hawley.senate.gov/contact-senator-hawleywww.hawley.senate.gov
Jeanne ShaheenD-NHMember, Senate Armed Services (202) 224-2841(603) 750-3004https://www.shaheen.senate.gov/contact/contact-jeannewww.shaheen.senate.gov
Kirsten E. GillibrandD-NYMember, Senate Armed Services(202) 224-4451(518) 431-0120https://www.gillibrand.senate.gov/contact/email-mewww.gillibrand.senate.gov
Richard BlumenthalD-CTMember, Senate Armed Services(202) 224-2823(860) 258-6940https://www.blumenthal.senate.gov/contact/www.blumenthal.senate.gov
Mazie K. HironoD-HIMember, Senate Armed Services(202) 224-6361(808) 522-8970https://www.hirono.senate.gov/contactwww.hirono.senate.gov
Tim KaineD-VAMember, Senate Armed Services(202) 224-4024(804) 771-2221https://www.kaine.senate.gov/contact/share-your-opinionwww.kaine.senate.gov
Angus King D-MEMember, Senate Armed Services(202) 224-5344(207) 622-8292https://www.king.senate.gov/contactwww.king.senate.gov
Martin HeinrichD-NMMember, Senate Armed Services(202) 224-5521(505) 346-6601https://www.heinrich.senate.gov/contact/write-martinwww.heinrich.senate.gov
Elizabeth WarrenD-MAMember, Senate Armed Services(202) 224-4543(617) 565-3170https://www.warren.senate.gov/contact/shareyouropinionwww.warren.senate.gov
Gary C. PetersD-MIMember, Senate Armed Services(202) 224-6221 (313) 226-6020https://www.peters.senate.gov/contact/email-garywww.peters.senate.gov
Joe Manchin D-WVMember, Senate Armed Services202-224-3954304-342-5855https://www.manchin.senate.gov/contact-joe/email-joewww.manchin.senate.gov
Tammy DuckworthD-ILMember, Senate Armed Services(202) 224-2854(312) 886-3506https://www.duckworth.senate.gov/connect/email-tammywww.duckworth.senate.gov
Doug Jones D-ALMember, Senate Armed Services(202) 224-4124(334) 230-0698https://www.jones.senate.gov/contact/email-dougwww.jones.senate.gov

Back to Steps




Illinois Governor Signs Law Expanding Insurance Coverage for Lyme Disease Treatment

On August 12, 2019, Illinois Governor, JB Pritzker, signed House Bill 889 into law which will expand insurance coverage for Lyme Disease testing and treatment. According to the Governor, this new legislation has been greatly needed and is a big step forward in protecting children and families throughout the state.

Tick-borne illnesses have been on the rise throughout Illinois since 2004, and have had an especially devastating effect on working-class farming communities.

“Many are losing their homes, their businesses and their pensions to try and pay for continued treatment,” said Illinois Lyme Association Director Jennifer Russell. “This legislation provides them with desperately needed options.”

The new law will be a great source of support for families who have struggled to pay for the high costs of continuous treatments often associated with long-term recovery. “State government ought to be standing up for working families … Expanding health care coverage is one important way to help lower costs and build a higher standard of living for all Illinoisans,” said Governor Prizker.

Sources:
week.com
http://ilga.gov
www2.illinois.gov

Lyme Disease Association, Inc. has not yet reviewed this legislation.

 



Breaking News! US House Actions on Lyme & TBD: July 9, 1 Passed & 1 Blocked

Congressman Christopher Smith (NJ)
Congressman Christopher Smith (NJ)

Congressman Christopher Smith (R-NJ-04) has been pushing for funding and recognition of Lyme and tick-borne diseases over the past 27 years. On July 9, 2019, Mr. Smith testified before the Committee on Rules and introduced two amendments relating to Lyme and tick-borne diseases to the Defense Authorization Bill (National Defense Appropriations Act).

ONE PASSED RULES COMMITTEE
Congressman Smith’s first amendment #321 directs the Inspector General of the Department of Defense to initiate an investigation into the Department’s possible involvement in the bioweaponization of ticks and other insects. The amendment and requested investigation was inspired by information revealed in Lyme survivor Kris Newby’s new book, “Bitten: The Secret History of Lyme disease and Biological Weapons.” This amendment was made in order by the Committee (passed by voice vote) and will be scheduled for a vote later this week, in consideration with the full NDAA legislation.

Update: On July 12 the US House of Representatives voted to pass amendment #321 directing the Inspector General of the Department of Defense to “conduct a review of whether the Department of Defense experimented with ticks and other insects regarding use as a biological weapon between the years of 1950 and 1975 (source rollcall.com).”

Various media throughout the U.S. and in the U.K published news of Amendment #321:

House orders Pentagon to say if it weaponized ticks and released them rollcall.com

We need to find out: is there anything in this research that was supposedly done that can help us to find information that is germane to patient health and combating the spread of the disease.” – Pat Smith, President of Lyme Disease Association in CQ Roll All and The Sun (UK)

Pentagon ordered to reveal to Congress if its scientists used diseased TICKS as biological weapons – and if any escaped the lab – thesun.co.uk 

Did Pentagon turn ticks into bioweapons that spread Lyme Disease? N.J. congressman wants answers – nj.com

“We know that the government was doing other kinds of experiments during that time,” said Pat Smith, president of the Jackson, N.J.-based group. “Absolutely it needs to be looked at. The public needs to know if this has occurred.” – Pat Smith in nj.com

Video: Did the Pentagon’s weaponization of ticks lead to the spread of Lyme disease? foxnews.com

House calls for investigation into whether Pentagon tried to weaponize ticks – thehill.com

House of Representatives orders Pentagon to investigate whether ticks were once used as biological weapons – cnn.com

House passes amendment ordering Pentagon to review whether U.S. experimented with weaponizing ticks – cbsnews.com

House orders Pentagon to review if it exposed Americans to weaponised ticks – theguardian.com (UK)

Did the US Invent Lyme Disease in the 1960s? The House Aims to Find Out – defenseone.com

Lyme disease as war weapon? Rep. Chris Smith’s push for probe advances after call for Trump to investigate – Asbury Park Press, app.com 

Pentagon Ordered to Tell Congress If It Weaponized Ticks And Released Them Into the Public – gizmodo.com

Did the U.S. Invent Lyme Disease in the 1960s? The House Aims to Find Out – govexec.com

Did the Pentagon weaponize ticks with Lyme disease? Congress wants to know – deseretnews.com

Lawmakers pass measure to investigate if ticks were used as bioweapons – daytondailynews.com

Kris Newby responds to Telford’s criticism of BITTEN – lymedisease.org


The ‘Swiss Agent’: Long-forgotten research unearths new mystery about Lyme disease –https://www.statnews.com/2016/10/12/swiss-agent-lyme-disease-mystery

STAT, an internet publication and affiliate of the Boston Globe, published an article on October 12, 2016, by Charles Piller, which focused on Swiss-born scientist, Willy Burgdorfer, who discovered the Lyme pathogen/spirochete (Borrelia burgdorferi) in 1981.  STAT obtained documents of Burgdorfer’s after his death in 2014, that indicated a different pathogen was involved in Lyme disease – Ricksettia helvetica, aka the Swiss Agent, which he discovered in Switzerland in 1978. This pathogen was infecting people in Connecticut and Long Island in the late 1970s. “And scientists who worked with Burgdorfer, and reviewed key portions of the documents at STAT’s request, said the bacteria might still be sickening an unknown number of Americans today.” Burgdorfer’s documents also suggest regret that he never followed up on the Swiss Agent.


CONGRESSMAN SMITH’S SECOND AMENDMENT WAS BLOCKED
Amendment #322 directs the Secretary of Defense to work with the Secretary of Health and Human Services to develop a whole-of-government strategy on Lyme disease and other tick-borne diseases infecting members of the Armed Forces and civilians. This second amendment was blocked by Democrats on the Committee in a party-line vote, and will not move to the House floor for a vote at this time. See Motion & votes from Rules Record Vote #151

See votes below. If your legislator blocked, contact him/her and tell them unacceptable! We need a national strategy to fight Lyme.

Yes to pass
Tom Cole (R-4-OK) Ranking Member
Rob Woodall (R-7-GA)
Michael C. Burgess (R-26-TX)
Debbie Lesko (R-8-AZ)

No (Blocked)
Jim McGovern (D-2-MA) Chair
Norma Torres (D-35-CA)
Ed Perlmutter (D-7-CO)
Jamie Raskin (D-8_MD)
Mary Gay Scanlon (D-5-PA)
Joseph Morelle (D-25-NY)
Donna Shalala (D-27-FL)
Mark DeSaulnier (D-11-CA)                         


June Actions: 2 Smith Amendments Pass House of Representatives, 1 Delgato Passes
Christopher H. Smith’s (R-NJ-04) amendment, which was approved (Division C of H.R. 2740), adds $2 million to the DOD’s Congressionally Directed Medical Research Program (CDMRP) for Tick-Borne Disease Research. The program is currently funded at $5 million.

Mr. Smith’s other amendment, adopted on June 12th, will increase funding for Lyme disease research at the Centers for Disease Control and Prevention (CDC) for FY 2020. He had testified in March 2019 before the House panel that oversees the CDC, and pushed for an increase from the base $11 million to $15 million at the CDC for Lyme. After his testimony, the committee boosted the funding to $13 million. Click here for Chris Smith Press Release

Another amendment which then passed was introduced by Antonio Delgado (D-NY-19). It provided $1million to CDC for FY 2020— bringing CDC total to $14 million. Click here for Antonio Delgado Press Release

 

 

 

 

 




Companion Lyme Bills Introduced in House & Senate

Senator Susan Collins
Senator Susan Collins

Senator Susan Collins (R-ME), along with Tina Smith (D-MN), a member of the Senate Health Committee, and Senator Angus King (I-ME) an original cosponsor, introduced a bipartisan effort to improve research, prevention, diagnostics, and treatment for tick-borne diseases. Representative Christopher Smith (R-NJ), with lead co-sponsor Representative Collin Peterson (D-MN) introduced a bipartisan companion bill, the identical House version of the Tick Act, HR3073, into the House of Representatives. It was referred to the House Energy & Commerce Committee.

Rep. Chris Smith
Rep. Chris Smith

The Tick Act, Ticks: Identify, Control, and Knockout (TICK) Act, S1657, is an effort to effort to improve research, prevention, diagnostics, and treatment. The Tick Act incorporates significant language from the HR 220 Chris Smith (NJ-4) bill introduced early in 2019 to establish an office for tick-borne diseases but broadens the scope to vector-borne diseases, which include tick-borne diseases but also mosquito and other insect-borne diseases. The bill also reauthorizes Regional Centers for Excellence in vector-borne diseases for FY2021-2026, $10M per fiscal year, as their current funding runs out in 2021. Additionally, the bill authorizes CDC grants of $20M per year to state health departments to improve collection of data, improve early diagnosis, improve treatment, and raise awareness.

Oct 31 – Press Release from collins.senate.gov:
Legislation Introduced by Senators Collins, Smith to Combat Lyme and Other Tick-Borne Diseases Clears Senate Hurdle




Historic Lyme Bill, HR 220, Reintroduced in New Congress by Rep. Chris Smith

Smith HeadRep. Chris SmithRep. Chris Smith (R-NJ), founder and co-chair of the Congressional Lyme Disease Caucus, reintroduced legislation on January 3rd, the first legislative day of the 116th Congress, to create a new national strategy on Lyme disease and other tick-borne diseases and have a better coordinated federal response across agencies to fight, treat and prevent tick-borne disease. The bill number is HR 220, and Minnesota Congressman Collin Peterson is the lead Democratic co-sponsor of the legislation.

Regarding the legislation, LDA President, also an HHS Tick-Borne Disease Working Group member, Pat Smith, said: “Everyone deserves protection against Lyme disease, yet Lyme has marched forward unchallenged across the US for decades, disabling many including our most precious resources, our children, who are a high risk group. CDC announced in its Vital Signs monthly report that tick-borne disease case numbers have doubled between 2004-2016, and the US is not prepared to deal with this threat—a fact substantiated by the 2017 record number of CDC-reported Lyme cases, 42,743. Factoring in under-reporting, 427,430 new Lyme cases occurred in the US alone in 2017, a staggering number, which does not include other tick-borne diseases (TBD) and disorders facing Americans.

Tick vectors of disease continue to proliferate unchecked, and the recent emergence over last year of a new self-cloning tick in the US that can lay up to 2,000 eggs, longicornis—that has already spread to nine states—should signal that we have a new enemy, yet we still have no idea what damage this one can do. Everyone is a potential casualty. This bill provides a plan for a national strategy under HHS to help, through research, patients already debilitated by Lyme/TBD—fighting for diagnosis, treatment and for their very lives—and to help prevent others from facing the same fate by developing methods of tick control. The time for Congress to act on this bill is now! Losing this war is not an option, everyone is a potential casualty.”

The bill comes shortly after the HHS Tick-Borne Disease Working Group released its first annual report to Congress which states, “[t]ick-borne diseases have rapidly become a serious and growing threat to public health in the United States…. Studies indicate that Lyme disease costs approximately $1.3 billion each year in direct medical costs alone in the United States. A comprehensive understanding of the full economic and societal cost remains unknown…. Prompt diagnosis and treatment of tick-borne diseases are crucial to prevent long-term complications. Today, available diagnostic tests can be inaccurate and complex to interpret, especially during the earliest stage of infection when treatment is most effective.…This leaves physicians without the tools needed to diagnose; and without an accurate diagnosis, it is challenging for physicians to provide early treatment… Persistent symptoms after treatment of Lyme disease can be severe, yet their cause(s) remains unknown and debated. There are currently no uniformly accepted or validated treatment options for patients with these chronic symptoms…. Increased Federal funding, prioritization, and leadership are needed to reverse the alarming trends associated with tick-borne diseases.”

The Lyme Disease Association, Inc. supports the bill and will be posting updates on actions that can be taken to help support the passage of this ground breaking legislation.

Congressman Smith Press release

To read about the original introduction of the last House Session of this bill in 2018, Click Here.

Click here for HR 220 Bill Text