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June 2, 2015
New Monies for Lyme Research Under Defense Health Program
Congressman Chris Smith (NJ-4) announced today that Congressionally Directed Medical Research Program (CDMRP) funds for Lyme disease have been included in the Department of Defense Appropriations bill which passed the Defense Subcommittee last week, and the bill passed the full Appropriations Com mitt ee today. It will now move to the floor of the House.
Congressman Chris Smith and
LDA President Pat Smith
 

"Good news  

on two fronts,"

said LDA President Pat Smith: "not only does the inclusion recognize the seriousness of Lyme disease for the military and provide $5 million dollars for Lyme disease research for FY2016, but it also means Lyme disease most likely will be included in the CDMRP program in succeeding years, with an opportunity to perhaps get increased funding." 
 

The Lyme Disease Association (LDA)
Congressman Rodney Frelinghuysen
thanks House Lyme Caucus Co-Chairs Congressmen Chris Smith (NJ-4), Collin Peterson (MN-7), Lyme Caucus Members and Congressman Rodney Frelinghuysen, DoD Subcommittee Chair (NJ-11), for their efforts to get Lyme disease included on this CDMRP list. Click here for House Lyme Caucus Letter to Defense Appropriations Subcommittee    

  

Congressman Smith has been working on having Lyme included into the program for several years, a difficult feat. The LDA has worked with him on the issue over time and also sent in letters to the Committee and had meetings with Congressmen to try to educate them to problems faced by the military due to Lyme disease and to get Lyme on the list of diseases to be funded under the Defense Health Program.

 

According to the Armed Forces Health Surveillance Center report, confirmed cases of Lyme disease in the services were diagnosed at more than 120 locations worldwide. Air Force (AF) aeromedical concerns may require flyers to receive a waiver to fly if they have Lyme disease.  

 

According to the AF, "As with all infectious diseases, if recognized and treated early with full resolution of symptoms, return to flight status is appropriate. However, if untreated, then aeromedical concerns of this disease are its debilitating effects in regards to the neurologic, cardiovascular, and arthritides that may result. Neurocognitive impairment, cardiac arrhythmias and arthritic pain are all manifestations that could impact the safety of the individual and mission."  
Click here for LDA's Lyme Disease And Armed Services Briefing Paper      


These new funds will help not only those in the military affected by Lyme disease, but also all of those outside the military. 

 

Colleen Nicholson, leader of Military Lyme Support, an LDA partner organization, said "For years we hoped and prayed that something would change allowing Military service members and their families to receive appropriate care. Today, thanks to the tireless efforts of Congressman Smith and the LDA, that hope is a reality. This new funding will begin to tip the scales in favor of the Military Lyme patient, allowing them access to proper care and treatment, and hopefully lead to eradication of these debilitating diseases." 
IDSA Responds to Lyme Caucus/LDA Group Letters

The House Lyme Disease Caucus  

Co-Chair Congressman 
Congressman Chris Smith
Christopher Smith (NJ-4) has released a letter from the Infectious Diseases Society of America (IDSA) regarding its new Lyme Guidelines.  

 

History: LDA led the effort to get 57 groups signed on to a letter expressing concerns about the proposed IDSA Guidelines Development process which was sent to the Caucus. (Click here to read letter) 

 

As a result, the Caucus sent a letter ( Click here to read letter ) expressing concerns and transmitted the LDA group letter to the IDSA. The IDSA quickly responded to Co-Chair Congressman Chris Smith that it would extend its time for input into the process by 15 days? a concern expressed by the groups.

 

Update: Late last week, the Caucus received a letter (Click here to read letter) from the IDSA/AAN/ACR? the 3 groups partnering in the new Lyme disease guidelines' development? addressing the issues which were raised by the Caucus and LDA group letters.   

 

The response included agreeing to add "at least one current or former patient and a parent of a patient treated for confirmed Lyme disease to the panel." The IDSA indicates it is working on identifying those patients, although no indication has been given that it will ask input from the active Lyme community in choosing those patients, and whether the language in the letter, "confirmed Lyme disease," automatically rules out chronic Lyme patients sitting on the panel-those who would be most highly impacted by the decisions of the panel, those with diagnostic, treatment and insurance difficulties relating to Lyme.  

 

The letter also stated another period of public comment would be provided when a draft of the Guidelines are available.

 

No Lyme advocate has been included in the process, nor have any treating physicians. Questions of transparency and conflicts of interest on the new IDSA panel were mentioned in the IDSA response letter; however, the LDA is gravely concerned that the answers provided do not appear to be consistent with the realities of the process.  

 

Although the IDSA alludes to its adherence to GRADE methodology, it did not mention that the GRADE method would be a modified one, using summaries of studies rather than the actual studies, which may then never be evaluated by the panel itself. LDA will work further with its Lyme community partners to further explore these issues and what steps can be taken to level the playing field for chronic Lyme patients.

 
Lyme Bill Included in Broader Healthcare Unanimously Passes E&C 
Chairman Fred Upton

The Energy & Commerce Committee (E&C) passed The 21st Century Cures Act, HR 6, by a vote of 51-0, on May 21, 2015. Chairman Fred Upton (MI) included in an expected amendment to the sweeping public health legislation, Lyme disease language.

 

The language that was included was the
Congressman Chris Gibson 

exact language of the Tick-Borne Disease Research Accountability and Transparency Act of 2014, Chris Gibson (NY-19), into which LDA and the Lyme community provided extensive input and helped to secure full House passage last Congress.

Click here for HR 6 bill text amendment (Lyme - p.46)  

 

The Lyme disease language in HR 6 sets up a working group with patients and physicians at the table and contains language requiring the Secretary of Health & Human Services (HSS) to submit a strategic plan to Congress to include "a plan for improving outcomes of Lyme disease and other tick-borne diseases, including progress related to chronic or persistent symptoms and chronic or persistent infection and co-infections; ... a plan for improving diagnosis, treatment, and prevention."

 

The language also specifies that the Working Group established shall meet at least twice each year and that it shall be subject to the Federal Advisory Committee Act (FACA), which requires transparency in operations of the Working Group. Under FACA, meetings must be publicly announced, open, and provide an opportunity for divergent viewpoints. Minutes, as well as other records and reports must be made available to the public. FACA also stresses the importance of having a fairly balanced membership in terms of points of view represented.

 

The 21st Century Cures Act, HR 6 Click here for complete text of HR 6 without amendment  is a comprehensive piece of health legislation intended to help modernize and personalize health care, encourage innovation, and streamline systems to deliver better, faster cures to more patients. The unanimous Committee vote indicates probable passage in the full House, including the minimal cost Lyme portion.

 

In developing The 21st Century Cures Act, the E & C Committee solicited input from the public, and both the Lyme Disease Association, Inc. (LDA) Click here for LDA letter to E&C, LymeDisease.org (LDo) and other advocates provided comments on the need to address Lyme disease.

 

In further communications with E & C, last month, LDA and LDo provided substantive comments on IDSA's Lyme Guidelines Project Plan Click here for LDA-LDo letter on Plan, and in 2014, the LDA organized a letter signed by 154 Lyme & tick-borne disease groups and others that was sent to every E & C Committee member to support the subsequent successful passage of the Lyme bill last year. Click here for LDA/154 group letter to E&C  

 

The LDA took a closer look at several areas in the bill and several provisions of the 21st Century Cures will require vigilance and possible action by the Lyme community as they are implemented after the bill becomes law. Click here for LDA analysis of 21st Century Cures Provisions  

 

We are extremely appreciative of and wish to thank Chairman Upton and all of the E&C members who supported the inclusion of Lyme disease language in HR 6. We thank Rep. Gibson for his hard work and his partnership with the Lyme community in developing HR 789/4701, which became the language in the newly passed HR 6.
ABOUT THE LDA: An all-volunteer national nonprofit 501(c)3, dedicated to Lyme disease education, prevention, research, and patient support. LDA has been accepted into the Combined Federal Campaign 2015 as an approved national charity for Federal Workplace Giving. It's a Guidestar.org exchange gold level member, recognized for transparency and is an Environmental Protection Agency PESP Partner. LDA offers its LymeAid 4 Kids assistance program and has funded 100 research grants? funded research has been published in 35 scientific journals.  LDA has provided 15 annual Continuing Medical Education Lyme & Other Tick-Borne Diseases conferences for physicians and researchers.
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