Help Us Work for You/Tick Act Becomes Law/ILADS Defines CLD/TBDWG 2020 Meeting/Torrey Lawsuit Update

LDA NEWS & UPDATES

December 26, 2019

Help Us Work for You!

Let's Provide a Healthier New Year

This year has been another busy one for the Lyme Disease Association (LDA). We have now been working for Lyme and tick-borne diseases (TBD) for 29 years, with individuals who are patients and family members of patients driving the programs. We care about you, your family, your friends, your pets, who have or might acquire Lyme disease and other TBD. That is why 97% of our funds go directly to programs most years. By donating today you can help us continue our programs to help Lyme patients.

Over time, we have awarded 118 research grants (3 in 2019) which have resulted in 51 peer reviewed journal articles. In 2019, one was published in Meta Gene which examines a possible correlation between genes and chronic Lyme. Publishing moves the scientific field forward and brings us closer to a cure. Read More.

President Signs Tick Act into Law

Hope for TBDs

On December 20, 2019, President Trump signed the Kay Hagan Tick Act into law as part of an end-of-year spending package that had passed both Houses.

The bill had been introduced by Rep. Chris Smith (R-NJ) in the House and by Senator Susan Collins (R-ME) in the Senate. The bill language was changed in the Senate before passage out of the Senate HELP Committee. That language was changed slightly again at the House level before being incorporated into the end-of-year Appropriations bill. The good news is, Lyme will get some monies for the development of a vector-borne disease

national strategy and also for CDC grants to States to help provide funding for surveillance and other vector-borne diseases issues. Read More .

View the Tick Act bill text.

Visit Rep. Chris Smith's website.

ILADS Publishes Evidence-Based Definition of CLD

Peer-Reviewed Designation

The International Lyme and Associated Diseases Society (ILADS), a non-profit, international, multidisciplinary medical organization, has provided an evidence-based definition of Chronic Lyme

Disease (CLD) published in the journal Antibiotics as a concept paper. ILADS has defined CLD as “a multisystem illness with a wide range of symptoms and/or signs that are either continuously or intermittently present for a minimum of six months.” ILADS specifies that the “illness is the result of an active and ongoing infection by any of several pathogenic members of the Borrelia burgdorferi sensu lato (Bbsl) complex” and has variable latency periods.

ILADS has designated CLD into two subcategories ... Read More.

Click Here to read the peer-reviewed article.

TBDWG Jan. 2020 Meeting in DC, Comments Accepted

Next Meeting Dates Announced

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 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.

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 to register to attend the 11 ^th TBDWG Meeting in person.

Click Here for more information on how to submit a public comment in-person or by email.

Click Here for furthered information on the HHS.gov website.

Torrey vs. IDSA/Insurers Lawsuit Updat e

Update on Federal Lawsuit

The Lyme Disease Association is providing an update regarding Torrey vs. IDSA/Insurers, the federal lawsuit filed by 24 Lyme patients against six members of the Infectious Disease Society of America (IDSA) and eight insurance companies in the U.S. District Court for the Eastern District of Texas, Texarkana Division.

Recently, two documents were filed electronically by the suit’s mediator. The first announces that Kaiser Permanente, one of the eight insurance company Defendants, has settled with the Plaintiffs. The second stated that the mediation session, which commenced in February of this year, has been suspended, and that “the under-signed mediator will continue to work with the parties in an effort to settle”.

More recently, according to investigative

journalist and author, Mary Beth Pfeiffer, “Proceedings have again been delayed, to 2/14/20. Parties will report by 1/31/20 on ‘agreements and/or differences concerning the case schedule, the amount of time necessary to finish discovery and trial timing.'”

At this stage, this is all the information that has been released to the public