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. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 




Important! Fox Lyme Special Award Finalist, Vote it to the Top Now!




 

Vote Now! Click here to vote for “Lyme & Reason”

The public can vote one time per day until January 31st
1 vote per category, per calendar day, per device

“Lyme & Reason: Battles & Breakthroughs Against Lyme Disease” has been nominated as a finalist for the 2020 Sharecare Awards, in partnership with the National Academy of Television Arts & Sciences, New York Chapter, renowned for the Emmy Awards. This is a great opportunity for the Lyme community to raise awareness about Lyme and other tick-borne diseases.

“Lyme & Reason: Battles & Breakthroughs Against Lyme Disease” features interviews with:

  • LDA President, Pat Smith: Increase of Lyme in NJ; Lyme vaccine
  • Investigative Journalist & Author, Mary Beth Pfeiffer: Climate Change: First Epidemic of Lyme Disease
  • Shereef Elnahal, MD, MBA: Increase of Lyme in NJ
  • Rep. Christopher H. Smith (NJ-4): House Bills, HR 665 and HR 5900
  • President/CEO, Valnova, Thomas Lingelbach: Human Lyme vaccine development
  • Director, Milford Molecular Diagnostics, Sin Hang Lee, MD: Early Detection Lyme Testing and the CDC
  • Founder, LivLyme Foundation, Olivia Goodreau: Lyme patient and advocate funding Lyme treatment research, Inventor of TickTracker App.

The episode examines the progress being made in research, testing and medicine, along with coverage of Tick-borne Disease Working Group activities, legislation, patient issues and the effects of climate change.

Vote now! Click here to vote for Lyme & Reason! 

Watch Lyme & Reason: Battles & Breakthroughs Against Lyme Disease

Click here to View clips from the Lyme & Reason five-part series, plus many of the original interviews in their entirety


 

About: The Sharecare Awards serve as a vehicle to reward talented creators and inspire others to follow their example into the future, as well as provide heightened visibility to critical issues concerning health and wellness. 

In addition to contending for the Health/Science: Program/Special award, “Lyme & Reason” is competing for the special Sharing Care Award. The winner of the Sharing Care Award will be announced live from the second annual Sharecare Awards gala on March 26th in Atlanta, hosted by cardiothoracic surgeon and Emmy Award-winning host of “The Dr. Oz Show,” Dr. Mehmet Oz. This celebratory event will present several other additional awards of distinction, including the Founder’s Award, Humanitarian Award (Individual), Humanitarian Award (Organization), and Lifetime Achievement Award.

The Sharecare Awards are operated through the Sharecare Foundation, a nonprofit entity that Sharecare established solely in support of this awards program.

Sharecare Awards was established in 2019 with the National Academy of Television Arts & Sciences, New York Chapter (NY NATAS), which fosters creativity and inspires artistic and technical excellence through the renowned Emmy® Award, the Sharecare Awards promote and reward excellence for the best productions and programming in health and well-being. Honorees in the inaugural Sharecare Awards included acclaimed actress, producer, author, social activist and philanthropist Marlo Thomas; renowned neurosurgeon and CNN chief medical correspondent Dr. Sanjay Gupta; the American Red Cross; National Kidney Foundation; AARP; and American Heart Association, among others.

Visit the Sharecare Awards website for more information

View the Sharecare Awards Academy of Judges

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 




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.




HHS Announces Sep 12 Tick-Borne Disease Working Group Meeting

State CapitalThe Department of Health and Human Services (HHS) gave notice that the Tick-Borne Disease Working Group (TBDWG) will hold a public meeting via webcast on September 12, 2019, from 8:30 a.m. to 5 p.m. ET (times are tentative and subject to change).

At the upcoming meeting, the TBDWG will receive updates from eight subcommittees that were formed and tasked with drafting a 2019 report for the HHS Secretary and Congress regarding activities and research related to tick-borne diseases, such as surveillance, prevention, diagnosis, diagnostics, and treatment (source, hhs.gov). The subcommittees will take into consideration the 2018 report and are expected to identify gaps in tick-borne disease research as well as offer suggestions (source, federalregister.gov).

The confirmed times and agenda items for the online meeting will be posted on the TBDWG page of the HHS website.  Members of the public who wish to view this meeting online are encouraged to register. Click here to register for the September 12th TBDWG Meeting.

Article References: FederalRegister.Gov and HHS.Gov

View the announcement for the 10th meeting of the TBDWG on FederalRegister.Gov




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




LDA Urges Immediate DC Lyme Bill Action

What Action Needed: Contact your own 2 US Senators today by email or phone. Click here for Senators
You can scroll down list to find your Senators or you can put your state name in the search box in upper right and your 2 senators will come up. Both email contacts and phone numbers are included in this official list.

What to say to Senate offices on phone or in email:
1. Your name and address.
2. Tell Senator XXXXX to co-sponsor S 1503, the Lyme bill.
3. The bill would form a Lyme & Tick-Borne Diseases Advisory Committee in DC with patient representation.
4. The CDC says more than 300,000 new cases of Lyme occur each year.
5. Tell them in a few sentences only how Lyme affects you, your family, friends, neighbors
6. Thank them.


History: The “21st Century Cures Act”, HR 6, passed the US House of Representatives and included the Lyme text of HR 789 (Gibson-NY). HR 6 was sent to the Senate for consideration. LDA supports the Lyme language in the 21st Century Cures Act. However, the Senate can act on HR 6 as is, but it can also amend it, or develop a new bill. The danger in amending the existing “Cures” bill or developing a new bill is the Senate may remove the Lyme language.


Why Action Needed: A bill, S 1503 (Blumenthal-CT), was introduced in the Senate in June. It is a companion bill to HR 665 (Smith-NJ) introduced in the House in February. At this time, because of possible Senate action when Congress comes back in session after Labor Day, we need to take action to get more sponsors onto the Senate version of the bill. If the Senate removes the Lyme language from the 21st Century Cures Act that the House passed, then the Senate might look to incorporate other Lyme language found in a bill that has sufficient Senate support (co-sponsors). The Senate could possibly move the Lyme bill on its own also (called a standalone). We need to be prepared.


Bill Details: See information on bills
Click here for Blumenthal Bill (S 1503)
Click here for Smith Bill (HR 665)
Click here for 21st Century Cures (HR 6)

NOTE BEFORE ACTING: Senators (below) have already signed on. You do not need to contact them.
Sen. Ayotte, Kelly [R-NH]*
Sen. Gillibrand, Kirsten E. [D-NY]*
Sen. Schumer, Charles E. [D-NY]*
Sen. Reed, Jack [D-RI]*
Sen. Whitehouse, Sheldon [D-RI]*
Sen. Klobuchar, Amy [D-MN]*
Sen. Coons, Christopher A. [D-DE]*
Sen. Casey, Robert P., Jr. [D-PA]*
Sen. King, Angus S., Jr. [I-ME]
Sen. Blumenthal, Richard [D-CT] (sponsor)

 

 




Immediate Action Needed on House Bill

Alert! Immediate Action Needed on House Bill Vote, May Be Early as Tomorrow (Tuesday) in DC

The Lyme bill, H.R. 4701 – Vector-Borne Disease Research Accountability and Transparency Act of 2014 (Sponsored by Rep. Chris Gibson / Energy and Commerce Committee), will go for a vote before the US House of Representatives somewhere between Tuesday, Sept. 9, and Thursday, September 11.


Primary Action to take

Click here for a link to find your own Congressman

Please call/fax/email your own US Congressman/woman RIGHT NOW and say:

Please support H.R. 4701 – Vector-Borne Disease Research Accountability and Transparency Act of 2014 that is before the House. Thank you.


If you want to take further action

Find all (or some other) Congressmen in your own state and contact them with the same message

http://www.house.gov/representatives/ find your state delegation


If you want further information on this bill*

Click here for further bill information

*Minor changes were made to the bill after the July mark-up in committee. This is the link to latest (Sept. 5, 2014) version of bill: http://docs.house.gov/billsthisweek/20140908/H4701_SUS_xml.pdf

 




July 12, 2012-House Subcommittee Lyme Hearing

July 13, 2012                                          
LDA Logo

Lyme Disease Association, Inc. 

 

    

 HOUSE SUBCOMMITTEE HEARING ON LYME 

The Lyme Disease Association, Inc (LDA) announces that the House Committee on Foreign Affairs, Subcommittee on Africa, Global Health, & Human Rights will hold a hearing 2PM, on Tuesday, July 17, 2012 in 2172 Rayburn HOB in Washington, DC. The hearing, Global Challenges in Diagnosing and Managing Lyme Disease – Closing Knowledge Gaps, will be webcast and available live via the Committee website http://foreignaffairs.house.gov/hearings/view/?1455 . (Video now available here http://archives-republicans-foreignaffairs.house.gov/hearings/view/?1455 Note:The actual video does not begin until 29:00 –  use your mouse to slide button to right to bring time to 29:00 faster)

US Representative Christopher H. Smith (NJ) is chairing the hearing.

(L) Pat Smith, President LDA, and (R) Congressman Chris Smith (NJ) at a 2010 Lyme and tick-borne disease meeting.

 

 

LDA President Pat Smith will be one of the witnesses presenting testimony─problems with doctors diagnosing and treating Lyme and with patients receiving treatment for Lyme.

Lyme disease numbers have continued to rise nationwide and throughout the world, and the Centers for Disease Control & Prevention (CDC) has indicated that in 2009, Lyme disease surpassed HIV in incidence─ Lyme was the 7th highest in disease incidence reporting. Lyme is no longer a disease of the Northeast. LDA has developed a pie chart using CDC reported case numbers for 2010 showing that 9 Northeastern states had 66% of the case reports, the remainder of the country had 34% of reported Lyme cases─ a 10% increase in disease in the remainder of the country from 2008 figures (see www.LymeDiseaseAssociation.org for pie chart). Experts have been seeing a significant increase in ticks and tick-borne diseases in 2012.

 

Lyme is now found in approximately 65 countries worldwide. From May through mid July of this year, the LDA had an electronic billboard in Times Square, NY, presenting that Lyme disease is found throughout the body and all over the world.

 

Currently, Congressman Christopher Smith has a bill introduced in the US House of Representatives HR 2557, and Senator Blumenthal has one introduced in the US Senate, S-1381, both calling for a federal advisory committee on Lyme and tick-borne disease with representation from patients, voluntary Lyme organizations, and from doctors and scientists from a broad spectrum of viewpoints on Lyme disease.

The room for the hearing will hold about 150 people and the public is invited to attend.  People should arrive 45 minutes early because there are lines for security. The Rayburn House Office Building does have a large cafeteria in basement.   

 

The LDA encourages everyone to contact their federal legislators to encourage their attendance and co-sponsorship of Us House bill HR 2557 (C. Smith-NJ) (click here for sample phone blurb/letter).  Also notify your state officials to encourage their attendance or viewing of the hearing and notify other officials such as your State Health Department officials and any other individuals that have an interest in Lyme and other tick-borne diseases. Please distribute and post this release to your websites, blogs, newspapers and any other media.

 

Stay tuned for an update and action on the Senate Lyme bill S-1381 (Blumenthal-CT) in the next few weeks. 

HEARING WITNESSES 

Stephen W. Barthold, Ph.D.
Distinguished Professor
Department of Pathology, Microbiology and Immunology
Center of Comparative Medicine, School of Veterinary Medicine University of California, Davis

Raphael Stricker, M.D.
Vice President
International Lyme and Associated Diseases Society

Mark Eshoo, Ph.D.
Director, New Technology Development
Abbott

Ms. Patricia Smith
President
Lyme Disease Association

Mr. Evan White
Lyme Disease Patient

Ms. Stella Huyshe-Shires
Chair
Lyme Disease Action

 

The  LDA is an all-volunteer national nonprofit, 501 (c) (3), (has never had employees), dedicated to Lyme disease education, prevention, raising monies for research, and patient support. It has been accepted into the 2012 Combined Federal Campaign (CFC) which recognizes it as an approved charity for federal workplace giving. It is also a Guidestar.org exchange member, recognized for its transparency in operations. LDA is an Environmental Protection Agency PESP Partner and offers LymeAid 4 Kids program for children without insurance coverage.

 

LDA-funded research has been acknowledged in 25 peer review journals to date, and LDA is presenting its 13th Lyme &Tick-Borne Diseases scientific conference jointly sponsored by Columbia University in Philadelphia in 2012. The faculty are comprised of national and international researchers in the field of tick-borne diseases and attendees can receive Continued Medical Education (CME) credits. LDA is associated with 45 Lyme organizations nationwide a loose network called LDAnet, with LDA as the umbrella organization. They are working together to make a difference for Lyme patients. In 2009, LDA developed an electronic billboard ad featured in Times Square, promoting the spread of chronic Lyme disease throughout the world.

 

For information on Lyme disease  www.LymeDiseaseAssociation.org  

PO Box 1438

Jackson, NJ 08527

888-366-6611  

 

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