Institute of Med.: Lyme Wrkshp Rept.

The Institute of Medicine (IOM) released its Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes Workshop Report, on April 20, 2011.

In a move designed to protest the National Institutes of Health’s (NIH) use of the IOM to conduct a workshop NIH was charged with organizing, the Lyme Disease Association (LDA), Time for Lyme (TFL), and the California Lyme Disease Association (CALDA), pulled out of the IOM workshop process and did not submit their commissioned scientific paper to the IOM committee. The three groups raised strong objections to the IOM process which:

1. permitted bias on the workshop committee and lack of transparency.
2. failed to satisfy the intent or objectives as delineated in Congressional Appropriations language.

On September 29, 2010, Congressman Christopher Smith (NJ) introduced for inclusion in the Congressional Record, “The Patient Perspectives on the Research Gaps in Tick Borne Diseases,” which he stated was written by “three of the Nation’s largest Lyme disease advocacy organizations [LDA, CALDA, TFL], who represent tens of thousands of patients.”

Links are provided below to review the IOM workshop proceedings, Lyme group actions, the Congressional report and the IOM workshop report.

September 20, 2010 Lyme Disease Association Press Release- Non Compliance Causes Lyme Patient Groups to Withdraw from Scientific Meeting 

September 29, 2010 Congressional Record 111th Congress Report- “The Patient Perspectives on the Research Gaps in Tick Borne Diseases”.
http://thomas.loc.gov/cgi-bin/query/z?r111:E29SE0-0367:

October 5, 2010 Lyme Disease Association Press Release- Research Gaps in Lyme Disease Exposed in the Congressional Record

April 20, 2011 IOM Workshop Report
http://www.nap.edu/catalog.php?record_id=13134

 

 




Petition:Grps’ Withdraw from IOM Forum

Sign up here!  Let Congress know you support decision by LDA, TFL and CALDA to withdraw from the Institute Of Medicine’s (IOM) State-of-the-Science Lyme and Tick-Borne Disease Workshop.

Please let Congress know you support the move by LDA, TFL and CALDA to withdraw from the NIH/IOM State-of-the-Science Lyme Disease and Other Tick Borne Diseases Workshop by reading the statement below and completing the response form. LDA will send your reply directly to Congressman Christopher H. Smith (NJ). It will not be used for any purpose other than this project. Thank you!

Lyme Groups Withdraw from Scientific Meeting

I support the move by the national Lyme Disease Association (LDA), the California Lyme Disease Association (CALDA), and Time For Lyme (TFL) to withdraw from the National Institutes of Health (NIH) sponsored workshop. I agree that the above groups should not participate in nor submit the Institutes of Medicine’s (IOM) commissioned scientific paper to the Panel in protest of the IOM’s workshop about the state of the science regarding Lyme and tick-borne diseases. Despite the 3 groups’ repeated requests for transparency and a balance of scientific viewpoints, as delineated in Congressional Appropriations language, neither the hearing panel nor the speakers selected by the IOM satisfy the Congressional intent or objectives.

The IOM’s mission was to provide an “independent, objective and non-partisan” program and there are no scheduled speakers with opposing viewpoints of similar scientific weight to balance Infectious Diseases Society of America (IDSA) presentations about the research gaps in Lyme disease. Many state-of-the-art scientific researchers, experienced clinicians and patient advocates have been relegated by the IOM and NIH to spectator positions. I believe that this amount of bias undermines the integrity of the scientific workshop and that its final report will reflect this lack of objectivity.

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For more information

Lyme Groups Press Release

Institute of Medicine (IOM) Lyme and other tick-borne diseases workshop meeting description

 

 

 

 




Non Compliance Causes Lyme Patient Groups to Withdraw from Scientific Meeting

In a move designed to protest the Institute of Medicine’s upcoming Lyme disease workshop, three of the nation’s largest and most influential Lyme groups have pulled out of the process.

NIH Does Not Comply with Congressional Appropriations Language
Lyme Patient Groups Compelled to Withdraw from Scientific Meeting


September 20, 2010 – In a move designed to protest the Institute of Medicine’s upcoming Lyme disease workshop, three of the nation’s largest and most influential Lyme groups have pulled out of the process. After much deliberation, speaker Diane Blanchard, co-president of the Time for Lyme (TFL- CT) has withdrawn from the panel. The national Lyme Disease Association (LDA- NJ) and the California Lyme Disease Association (CALDA), along with TFL, will not participate in the workshop and their IOM commissioned scientific paper will not be submitted.

The scientific workshop was promoted by the Institute of Medicine (IOM) to be a conference about the state of the science regarding Lyme and tick-borne diseases. Despite the groups request for transparency and a balance of scientific viewpoints, as delineated in Congressional Appropriations language, neither the hearing panel nor the speakers selected by the IOM satisfy the Congressional intent or objectives.

The IOM’s mission was to provide “independent, objective and non-partisan” advice to policy makers, yet the majority of the participants sitting on its Lyme disease panel belong to the Infectious Diseases Society of America (IDSA), a medical society with a known bias. Many key speaker roles were given to physicians who are IDSA members and supporters, a number of whom were involved with the IDSA’s controversial guidelines for Lyme. IDSA’s Lyme guideline development process was investigated by the Connecticut Attorney General which resulted in exposing the guideline panel as being riddled with undisclosed conflicts of interest.

In spite of the recommendations to NIH by Congress, the conference opens with perhaps the most polarizing figure in the chronic Lyme debate– Dr. Gary Wormser of Westchester Medical Center — who chaired the IDSA Lyme guideline panel and whose highly controversial biased views are well known. There are no scheduled speakers with opposing viewpoints of similar scientific weight to balance his presentation about the research gaps in Lyme disease. Many state-of-the-art scientific researchers and experienced clinicians have been relegated by the IOM and NIH to simply spectator positions.

The patient-oriented Lyme groups believe that this amount of bias undermines the integrity of the scientific workshop and that its final report will reflect this lack of objectivity. “We believe the entire process has the potential to cause additional harm to patients. After much deliberation our only recourse is to withdraw our support for this seriously flawed process. From the inception, TFL, LDA and CALDA have communicated our concerns, which were ignored. We remain hopeful that NIH/IOM will revamp the program to comply with the Congressional language which was responsible for initiating the workshop,” the groups said in a joint statement.

Time for Lyme, www.timeforlyme.org, the national Lyme Disease Association, www.LymeDiseaseAssocation.org, and California Lyme Disease Association, www.lymedisease.org, are non-profit organizations that were founded by individuals who had personal experience with Lyme disease, in order to address the lack of research, education and support services available for this emerging infection.




Institute of Medicine Review of Lyme

Click here for LDA testimony

Click here for Link to entire IOM premeeting




Center’s For Disease Control and Prevention (CDC)

The CDC is the nation’s public health agency.  From time to time, LDA will post articles of interest from the CDC on this page.

1999 CDC Cost Analysis (pdf)




Helpful Links

Military and Department of Defense (DOD) Special Education
http://www.wrightslaw.com/info/dod.index.htm#news




USACHPPM Lyme Disease Surveys

 

 




Lyme Disease And Armed Services Briefing Paper

According to the Armed Forces Health Surveillance Center report i, confirmed cases of Lyme disease in the services were diagnosed at more than 120 locations worldwide. Medical facilities at the following locations accounted for nearly one-half of the total: West Point, NY; Heidelberg, GE; Walter Reed Army Medical Center, Washington; Camp Lejeune, NC; Vilseck, GE; Landstuhl Regional Medical Center, GE; Naval Health Clinic New England (branch clinics in Newport, RI; Groton, CT; Portsmouth, NH; Brunswick, ME; Saratoga Springs, NY); National Naval Medical Center, Bethesda, MD; Fort Knox, KY; Andrews Air Force Base, MD; Fort Meade, MD; and McGuire Air Force Base, NJ. 2008 had nearly 3 times more confirmed cases than 2004.

Air Force aeromedical concerns may require flyers to receive a waiver to fly if they have Lyme disease. “The symptoms during primary Lyme disease, included arthralgias, fatigue, headache, neck pain and possible fever are obviously not optimal in the flying environment. 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.” ii

At a blood products advisory committee meeting on Babesia in the blood supply, Dr. Jesse Goodman, M.D., Director of FDA’s Center for Biologics, made the observation, “I will say I just finished a month of clinical attending at the Naval hospital in the summer, and I was actually fairly shocked by the number of cases of disseminated Lyme disease that we are seeing. So I think that the notion that we have control over tick-borne disease…we don’t really have a good hand on how many cases of primary infection[Lyme disease] there are.” iii

US Army Centers for Health Promotion & Preventive Medicine (CHPPM) report states that ticks are among the most important of all arthropod vectors of disease. There are over 850 recognized species worldwide. Ticks rank second only to mosquitoes in the number of life-threatening and debilitating diseases they transmit to humans. In the United States, ticks are responsible for more human disease than any other arthropod group. Tick-borne diseases represent potentially serious health threats to troops, their family members, DoD civilian employees, and other residents at military installations in many parts of the world.iv

The Lyme Disease Association, a national non profit, presented testimony to the Defense Health Board on a Lyme disease agenda item “LDA has spoken about Lyme disease on several bases and presented a 2002 educational briefing for military officials at a DC meeting arranged by then House Veteran’s Committee Chair, Congressman Christopher Smith (NJ). LDA provided noted clinicians who educated military officials from all branches of the armed services about chronic Lyme disease and the problems faced by Lyme disease patients…. Military doctors indicated they faced the same set of “political” problems in treating their Lyme disease patients…LDA has been invited twice to US Army Centers for Health Promotion & Preventive Medicine (CHPPM), Aberdeen Proving Grounds, where…CHPPM has shared its extensive work on identifying tick-borne disease organisms in various ticks found on military installations nationwide. CHPPM discussed its mapping of military installations for risks of Lyme disease and its plan to beam that information to satellites which then will convey it to handheld devices, alerting troops to the presence of ticks. CHPPM shared development of technology which enables it to test ticks in the field for any known disease agent, so that troops can be treated immediately if bitten by infected ticks. CHPPM has been both a speaker and exhibitor at LDA’s annual scientific conference for physicians on tick-borne diseases−conferences jointly sponsored with New York’s Columbia University. The LDA’s 9th annual scientific conference in San Francisco Oct. 17, 2008, has a speaker from the Armed Forces Institute of Pathology who will discuss the pathology of Lyme carditis….[Lyme can also produce palpitations, heart block, and valve prolapse.]” v

i Medical Surveillance Monthly Report Armed Forces Health Surveillance Center July 2009 Lyme disease among U.S. military members, active and reserve component, 2001-2008_
ii Air Force Aeromedical Corporate Board Meeting Minutes September 2005 airforcemedicine.afms.mil/waiverguide WAIVER GUIDE Updated: Jul 07 By: Lt Col Stephen Hingson (RAM 08) and Dr Karen Fox
iii Food and Drug Administration Workshop 2008 http://www.fda.gov/cber/minutes/ttb091208t.pdf
iv US Army Centers for Health Promotion and Preventive Medicine (CHPPM) to Congress in 1999 DoD Research and Surveillance Activities Regarding Lyme Disease and Other Tick-Borne Diseases,
v Lyme Disease Association, Inc. testimony, Defense Health Board Meeting, Sept 4-5, 2008 Falls Church, VA

 

© Lyme Disease Association, Inc. PO Box 1438 Jackson, NJ 08527 www.LymeDiseaseAssociation.org

 




LDA Partnering With EPA (PESP) Since 2008

LDA has been accepted as partner in the Environmental Protection Agency’s Pesticide Environmental Stewardship Program (PESP).The Pesticide Environmental Stewardship Program (PESP) is a voluntary program that forms partnerships to reduce the potential health and environmental risks associated with pests and pesticide use and to implement pollution prevention strategies.

LDA has been accepted as partner in the Environmental Protection Agency’s Pesticide Environmental Stewardship Program (PESP).

The Pesticide Environmental Stewardship Program (PESP) is a voluntary program that forms partnerships to reduce the potential health and environmental risks associated with pests and pesticide use and to implement pollution prevention strategies. Although LDA does not recommend or endorse products, many individuals choose to use repellents against ticks. The informed actions of pesticide users help reduce risk to people and the environment.

Pesticide Environmental Stewardship Program logo

See http://www.epa.gov/pestwise/pesp/members/index.html for program details (LDA is a Silver member).

 

 

EPA Announces New Website with Repellants, Effective times, Active ingredients

October 2009

The EPA has a new website containing a table for tick and/or insect repellents. It includes company name, active ingredient, % of ingredient, hours effective against ticks and/or mosquitoes, and EPA registration number. LDA does not endorse products but feels that consumers need to have available information that is easy to access to make informed choices if they decide to use any products. This site is a great resource.

To view click here

 

LDA Strategy for Reduction to Tick Exposure Accepted by EPA’s PESP Program

July 2009

LDA is part of the Environmental Protection Agency’s Pesticide Environmental Stewardship Program (PESP) in an effort to reduce risks to pests, in particular, ticks, thereby reducing risks to tick-borne diseases. The thrust of this partnership with USEPA is to educate schools and families on the necessity of protection from exposure to ticks which may carry disease causing pathogens. This strategy includes developing tools to be used in schools and developing educational tools for people who have access to public lands for outdoor uses, i.e. walking, hiking. EPA has now accepted LDA’s strategy.


 

LDA Meets with Federal Government on Lyme Prevention for Kids

 

June 24, 2009

 

Candy Brassard, Senior Biologist, Environmental Protection Agency; Dr. Ben Beard, Chief of Vector-Borne Diseases, Centers for Disease Control & Prevention; and Pat Smith, President, Lyme Disease Association at a meeting in DC on June 24 to discuss strategies to protect children from getting Lyme disease.

 

LDA Meets with EPA on Lyme Disease Prevention

June 4, 2009

LDA President Pat Smith held a Lyme briefing for the Environmental Protection Agency employees in Washington, DC on June 4 and afterward, met with EPA officials Edward Brandt, Senior Economist, Pesticide Environmental Stewardship Partner Liasion; and Frank Ellis, Senior Entomologist and Team Leader, Biopesticides and Pollution Prevention Program. LDA is a PESP partner of the EPA, to try and reduce ticks and risks associated with ticks–with LDA’s program goals to apply especially to children.




LDA Meets With NIH Lyme Officials

Spring 2009, Dr. Betty Maloney, Minnesoto; Tim Lynagh, Legislative Director for Congressman Christopher Smith (NJ-4); and Pat Smith, President, Lyme Disease Association; in the office of Congressman Chris Smith (not pictured) after a meeting with NIH Lyme Disease Program officials on the problems with Lyme disease, a NIH Lyme research agenda, and how patients are being affected by the lack of knowledge of the disease.

The following officials from NIH were present at the meeting: 

Carole Heilman, Ph.D., serves as Director of the Division of Microbiology and Infectious Diseases (DMID) at NIAID. DMID supports research to prevent and control diseases caused by virtually all human infectious agents with the exception of HIV, which is covered by the NIAID Division of AIDS.

Joseph J. Breen, Ph.D., Bacteriology Program Officer, Division of Microbiology and Infectious Diseases, NIAID

Adriana Marques, Ph.D., Head, Clinical Studies Unit, Laboratory of Clinical Infectious Diseases, NIAID, NIH

Click here for pdf of 5/18/09 minutes of the NIAID Council meeting where mention of the Lyme disease meeting 4/30/09 with the LDA was noted on page 3.