Important! Fox Lyme Special Award Finalist, Vote it to the Top Now!
Vote Now! Click here to vote for “Lyme & Reason”
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“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
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
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
TBDWG: Jan. 2020 Meeting in DC/In-person, Written Comments Accepted
The 11th meeting of the Tick-borne Disease Working Group (TBDWG) will be held on January 28 and 29, 2020, from 9:00 a.m. to 4:30 p.m. ET on both days (times are tentative). The HHS.gov site has announced that, for this meeting, the eight subcommittees will present their findings and potential actions for the TBDWG to consider. The TBDWG will hear updates from Public Comments and Inventory Subcommittees as well as advance discussions regarding plans for developing the 2020 report to the HHS Secretary and Congress on federal tick-borne activities and research. Information provided via Public Comment will be summarized and provided to the subcommittees for review and possible incorporation into the next TBDWG report.
The meeting will take place at the Hyatt Place Washington DC/US Capitol located at 33 New York Avenue NE, Washington, DC 20002. In-person attendance is limited to space available. Pre-reregistration for public members is advised and can be accomplished by registering on the HHS.gov site. Click Here to register to attend the 11th TBDWG Meeting in person.
To request an opportunity for in-person Verbal comments:
- Requests for verbal (in-person) public comment must be submitted via email by midnight Tuesday, January 17, 2020, ET to email@example.com. In the Subject line please enter: Verbal Public Comment – January 28-29 Meeting.
- A total of 30 minutes has been set aside for verbal comments on both days. Each person will be limited to only 3 minutes so that as many speakers can be accommodated as possible. Speakers will be randomly selected if more requests are received than can be accommodated.
- In-person remarks will be heard over a live webcast will become part of the archived meeting recording and summary which will be posted on the HHS.gov website.
To submit Written comments which will be posted on the HHS.gov webpage and accessible to the public:
- Written public comments must be submitted via email by midnight Tuesday, January 17, 2020, ET to firstname.lastname@example.org. In the Subject line please enter: Written Public Comment – January 28-29 Meeting.
- Please include a statement indicating how you would like to be identified with your comment. You may choose to use your name or to be anonymous. You may also list your city and/or state. If you are providing comments on behalf of an organization, please include the name of the organization. The TBDWG cannot post your comment until you advise how you would like to be identified.
- Comments should either be provided in the body of your email, or in an attachment in Word format and equivalent to no more than 4 pages in Calibri or Times New Roman, 11 point font. Text that exceeds the 4 pages will be deleted.
- The TBDWG does not post graphics, images, text boxes, or tables. If included with your comment, they will not be able to retain them.
- The TBDWG can only create hyperlinks to “.gov” sites (local, state, or federal). For all other reference sites, please insert the full URL (e.g., http://learn.genetics.utah.edu/content/epigenetics).
- The TBDWG is unable to include attachments as supporting documentation to written comments.
Members of the public who cannot attend in-person may attend the meeting via webcast. Instructions for attending via webcast will be posted approximately one week prior to the meeting.
Click Here for furthered information on the HHS.gov website, including the meeting agenda and more details on how to provide public comment.
Asking Congress to Stamp Out Lyme Without Using Federal Dollars
Congressman 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!
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.
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.
- 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
Step #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.
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
|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.
The Lyme Wars are Not Over for Patients & Treating Physicians
Almost a decade ago, Lyme advocates in Minnesota, pursuing Lyme doctor protection legislation, settled for a compromise from the State Medical Board which issued a Moratorium taking action against doctors who treat long term. The Moratorium was reviewed and extended in 2014, while awaiting more research on the topic.