03 April 2012

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.

 

26 May 2011

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.

Learn more
22 September 2010

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.

Learn more
20 September 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.

Learn more
16 July 2010
On Thursday April 29, 2010, the Institute of Medicine (IOM) convened a "pre meeting" to their proposed October 2010 workshop meeting that is supposed to address the state of the science in Lyme disease. The meeting was generated by passage of the 2010 appropriations language by Congress which included the words "chronic Lyme disease" and "persistence infection" in the report language. According to the Appropriations language (see the LDA Governement section) NIH was supposed to hold a state of the science conference, but instead, it contracted out its obligation to IOM. Lyme advocates were concerned by lack of process transparency and also by the fact that the IOM panel was biased, with many of the members being IDSA members or fellows and other panel members having held positions in the CDC. No treating physicians or patient reps were on the Panel. LDA, CALDA and Time for Lyme (TFL) wrote to the IOM Committee and to NIH and raised documented objections to the process and panel member selection. IOM did not reply.  NIH wrote a short letter saying the IOM review was fine, but it did not address any of the objections raised by the three organizations.
 
 
At the pre meeting in April, invited government representatives presented to the panel lengthy reports on prevention projects and touched on epidemiology. None addressed diagnosis and treatment or chronic Lyme. One presenter was video teleconferenced in from England and she presented some data related to that issue. In the afternoon, members of the public who signed up had 5 minutes to address the Committee, although that was selectively enforced.  LDA president Pat Smith addressed to the IOM panel the concerns of Lyme advocates relating to transparency of the IOM process and that it does not preclude bias as a factor in the panel selection. Additionally, the process allows undisclosed reviewers to provide input in the final report from the October panel.
 

LDA, CALDA, TFL also submitted suggestions for speakers at the October panel.  Lyme advocates are very concerned since the IDSA had requested an Institute of Medicine review when they lobbied against the Lyme bills (HR 1179/S1352) currently in Congress. 

Click here for LDA testimony

Click here for Link to entire IOM premeeting

Lyme Disease Association, Inc.
PO Box 1438, Jackson, NJ 08527 

888-366-6611 | information line
732-938-7215 | fax
LDA@LymeDiseaseAssociation.org | email

Back to top