Welcome to the Internet Home of the Lyme Disease Society at LymeSociety.com!

The Lyme Disease Society is a Pennsylvania-based volunteer group, founded in 2000, dedicated to advocacy
on Lyme disease and other Tick-borne diseases education, prevention, research and patient issues.

In Memoriam, Mary M. Halinski (1961-2013), Noted Patient Advocacy Leader,
Lyme Disease Society Co-Founder and Executive Director

Excerpts from 'Words of Remembrance' for his Mom written and delivered by her son Luke at her funeral -

"My Mom's life was a most beautiful Mosaic composed of many pieces: the people who my Mom impacted.  Her life was an extraordinary masterwork of love, with each unique piece, each person, glistening in the special way Mom knew them, helped them, cared for them and loved them.  My Mom radiated a vibrant generosity of spirit and love that will carry on always."

"Most of all, I know that now everyone here has a new advocate for them in heaven."

 

Mary M. Halinski, 52, of Lansdale, PA, passed away Friday, August 16, 2013, after extended health challenges from pancreatic cancer. She was the beloved wife of Robert Halinski, her husband of 32 years, and an amazing mother, sister, aunt and friend.





Lyme Disease Society Strongly Supports S 2398, Kay Hagan Tick
Reauthorization Act!

Lyme Disease Society strongly supports S 2398, Kay Hagan Tick Reauthorization Act, sponsored by Senator Susan Collins from Maine, with original cosponsors Senator Tina Smith and Senator Angus King in the US Senate. The bill reauthorizes continued work and updates to the National Strategy on Vector-Borne Diseases and supports important, coordinated efforts to fight Lyme and tick-borne diseases. Lyme Disease Society strongly supported the version of the Tick Act which passed Committee and became law and had input into that legislation in 2019 (see Previous Updates below for details!).

Thanks and appreciation to Senator Susan Collins for her tremendous leadership on this important legislation and issue!

S. 2398 was unanimously reported from the US Senate HELP Committee, under the leadership of Chair Senator Bill Cassidy, in late July, which was exciting news! Thanks very much to all of the Senators who supported in Committee and as Cosponsors!

It is great to have Senator Dave McCormick and Senator John Fetterman from Pennsylvania as cosponsors of this important legislation!

Contact your US Senators with the below link and ask them to support S 2398, or thank them for supporting, the Kay Hagan Tick Reauthorization Act

US Senate Official Website (outside site)
https://www.senate.gov/

Link to more information on S 2398 on Congress.gov (outside site)
https://www.congress.gov/bill/119th-congress/senate-bill/2398


Lyme Disease Society Strongly Supports SB 461 in PA Legislature:
Bill Would Help Lyme and Tick-Borne Disease Patients

Lyme Disease Society strongly supports SB 461, sponsored by Senator Michele Brooks, in the PA Senate, following on similar legislation which passed the PA Senate unanimously in in 2022 (SB 1188). SB 461 would help to ensure Lyme and tick-borne disease patients receive access to appropriate medical care and insurance coverage for their physician directed diagnostics and treatment. The bill expands education on Lyme and tick-borne diseases, facilitates tick testing and includes other provisions to help fight Lyme and tick-borne diseases in Pennsylvania. Thanks to Senator Brooks for her tremendous leadership and all the PA Senators who have supported this important legislation which would help Lyme and tick-borne disease patients!

If you live in Pennsylvania, you can contact your State Senator and ask them to support SB 461. You can use the below link to find and contact your State Senator.

Pennsylvania Senate Official Website (outside site)
https://www.palegis.us/senate

Link to a copy of SB 461 and bill information (outside site)
https://www.palegis.us/legislation/bills/2025/sb0461


HHS and CDC Release Vector-Borne Disease National Strategy

The federal Department of Health and Human Services (HHS) and CDC released their comprehensive National Public Health Strategy to Prevent and Control Vector-Borne Diseases in People (VBD National Strategy). The 2024 VBD National Strategy follows from the earlier 2019 passage of the Kay Hagan Tick Act. Lyme Disease Society supported passage of the Kay Hagan Tick Act. The VBD National Strategy is available at the below official website.

HHS/CDC National Vector-Borne Disease Strategy (outside site)

https://www.cdc.gov/vector-borne-diseases/php/data-research/national-strategy/index.html



2020 Federal HHS Tick-Borne Disease Working Group Report

The important 2020 federal HHS Tick-borne Disease Working Group (established by the 21st Century Cures Act) Report to Congress and the Secretary of HHS is available at the below official website.

HHS Federal Tick-Borne Disease Working Group Reports (outside site)

https://www.hhs.gov/ash/advisory-committees/tickbornedisease/reports/index.html


2021-2022 Previous PA Legislature Session:
Lyme Disease Society Supported Legislation SB 1188 Passes PA Senate &
PA House Passed HB 1033 to Help Patients Earlier

It was exciting news that SB 1188, sponsored by Senator Michele Brooks and strongly supported by Lyme Disease Society, passed the PA Senate unanimously in this past session in June 2022! SB 1188 would have helped to ensure Lyme and Tick-borne disease patients receive access to appropriate medical care and insurance coverage for their physician directed treatment. The bill also supported tick testing and included other provisions to help fight Lyme and Tick-borne diseases. Thanks to Senator Brooks for her tremendous leadership and all the PA Senators who supported this important legislation and helping Lyme and Tick-borne disease patients!

HB 1033 (HB 629 in previous session), sponsored by Rep. Rapp and strongly supported by Lyme Disease Society, passed the PA House earlier in that session in 2021 which was wonderful news as well. HB 1033 would have helped ensure Lyme and Tick-borne disease patients receive access to appropriate medical care and insurance coverage for their physician directed treatment. Thanks to Rep. Rapp for her outstanding leadership and all the PA Representatives who have supported Lyme and Tick-borne disease patients!


From December 2019: Victory! Kay Hagan Tick Act Passed by US Senate and House in Appropriations Package!

There is wonderful news as a very positive version of S 1657, Kay Hagan Tick Act, passed both the House and Senate as part of HR 1865, the Appropriations package. The bill now goes to the President for his signature. This is an important win in the fight against Lyme and Tick-borne Diseases! The bill includes a significant increase in funding authorization and also new coordination for federal efforts on Lyme and Tick-borne Diseases. Lyme Disease Society strongly supported this current legislation and had input during the legislative process. Congrats and great thanks to the Kay Hagan Tick Act bill sponsors Senator Collins and Senator Tina Smith! Thanks and appreciation go out to all of the bill's supporters in Congress, including Senator Alexander, Senator Casey from Pennsylvania, all of the Members who voted for the legislation, and the many House and Senate offices who were helpful and involved during the legislative process.

Previous Update - Exciting News: S 1657, Kay Hagan Tick Act, included in Appropriations Package!

There is exciting news as a positive version of S 1657, the 'Kay Hagan Tick Act', sponsored by Senator Susan Collins and Senator Tina Smith, was included in a year-end Appropriations package. If this larger package is passed by the House and Senate and signed by the President, the Kay Hagan Tick Act would become law. The bill includes an important increase in funding authorization and also new coordination for efforts to fight Lyme and Tick-borne Diseases. Lyme Disease Society supports the current version of the bill, which is similar to the HELP Committee version of the bill. Senators included Lyme Disease Society input on that Committee passed bill version. Thanks to Senator Collins, the bill's sponsor, for her leadership and longtime support of Lyme and Tick-borne Disease patients, and all of the bill's sponsors and supporters, including Senator Bob Casey from Pennsylvania.


Earlier Update: US Senate HELP Committee Passes Positive Version of Tick-Borne Diseases Legislation!

The US Senate HELP Committee passed by voice vote a very positive version of S 1657, the 'Tick Act.' The bill which passed Committee includes an important increase in funding authorization and also new coordination for efforts to fight Lyme and Tick-borne Diseases. Lyme Disease Society supported the HELP Committee version of the bill. Senators included Lyme Disease Society input on this bill version as well. Thanks to Senator Collins, the bill's sponsor, for her longtime support of Lyme and Tick-borne Disease patients. Thanks to Chairman Alexander, Ranking Member Senator Murray, Senator Casey from Pennsylvania, all the Senators on the Committee, and everyone who supported this Committee bill passing. The bill was renamed in memory of former Senator Kay Hagan, who recently passed away after a struggle with Tick-borne disease. Please note that this update is about the HELP Committee version of S 1657 'Tick Act' which passed. There is a different version of the bill introduced in the House.



Archive From Dec 2016: Victory! Congress Passes Federal 'Cures' Bill Including Tick-Borne Disease Legislation!

The US House and Senate have passed HR 34, the 21st Century Cures Act, including positive Lyme and tick-borne disease language! The bill will now head to President Obama, who has announced support, for his signature. The Cures bill includes language similar and taken from excellent federal Lyme and tick-borne legislation, sponsored by Rep. Chris Gibson, which had Lyme Society input. The language would establish a tick-borne disease working group with public members, including patients, non-profit organizations and clinicians.

Thanks very much to all who helped make this tremendous victory for patients happen! On the House side, Congrats and special thanks to Rep. Chris Gibson and his office for sponsoring the Lyme and tick-borne disease bill, and Chairman Upton and the bipartisan leadership on Energy and Commerce Committee. On the Senate side, Congrats and thanks to Senator Alexander, Chair, and the bipartisan leadership, of the HELP Committee, and special thanks to Senator Casey from Pennsylvania and his office for all of their support for patients and the fight against Lyme. Thanks to all members of the House and Senate who were involved and supportive of the Lyme and Cures legislation! Lyme Disease Society was involved and supported this legislative effort to fight Lyme and tick-borne diseases and help patients from the earlier stages through today's passage. Thanks to all of the groups and individuals in the Lyme disease community who supported this bill and worked on the effort.

Link to a pdf copy of HR 34, 21st Century Cures Act. Tick-borne disease section is Sec 2062. (outside site)



CDC - Lyme Disease Transmission

Link to information from the CDC on Lyme Disease Transmission (outside site)

https://www.cdc.gov/lyme/causes/index.html


CDC Lyme Disease Case Estimates and Statistics

Link to the CDC Statistics on Lyme disease cases (outside site)

https://www.cdc.gov/lyme/data-research/facts-stats/index.html


Study - Lack of Evidence Behind Certain Treatment Guidelines

Link to Study Published in Archives of Internal Medicine on Level of Evidence Behind
Infectious Disease Treatment Guidelines (outside site)

https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/226373

Link to Reuters article on Infectious Disease Treatment Guidelines Study (outside site)

https://www.reuters.com/article/idUSTRE70A06J20110111

Tick Removal

Link to the CDC's tick removal guide (outside site)

https://www.cdc.gov/ticks/after-a-tick-bite/index.html#cdc_response_factors_steps-how-to-remove-a-tick


Note:  The above  links are to external sites.  The information
and content at the linked addresses is outside the control of this site and the Lyme Disease Society.




If you are interested in joining the Lyme Disease Society email list or being involved with our volunteer advocacy work, email LymeSociety@aol.com.

Community Calendar

The Doylestown Lyme Disease Support Group met monthly in Bucks County, PA outside of Philadelphia.
*Please note: The support group's meetings were suspended due to the COVID-19 public health situation and not resumed.
Will update the community calendar as appropriate*

Click for more details


About the Lyme Disease Society


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