Are They Working Against Lyme Patients and Those Helping Them?  

You decide...

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES 
PUBLIC HEALTH SERVICE 
CENTERS FOR DISEASE CONTROL AND PREVENTION 
 
National Center for Infectious Diseases 
Board of Scientific Counselors 
 
Minutes of Meeting 
 
May 12 and 13, 2005 
Atlanta, Georgia 
 
The second topic of discussion among members of the breakout group is Lyme 
disease --- particularly the challenges presented by this disease that extend beyond 
science. 

Recently, highly organized groups of people have been expressing concern for 
CDC’s current case definition and laboratory criteria. Much of this effort has been 
triggered by unpaid insurance claims from patients with symptoms that are not included 
in CDC’s case definition for Lyme disease. 

In addition to these vocal organized groups, laboratories across the country are conducting inappropriate, or questionable, testing for 
Lyme. The tests are being sent to physicians who have not been appropriately trained to interpret them.
 
 The breakout group issued the following recommendations for DVBID regarding 
these Lyme-disease-associated issues.  

 

 The IDSA guidelines should be updated; a consensus document should be made 
available to physicians who need guidance.
 
 The CDC guidelines for interpreting laboratory tests should be updated in 
collaboration with industry and government experts.
 
 As updated guidance becomes available, an effort should be made to notify 
physicians and other practitioners regarding availability of clinical and laboratory 
documents. 

>>>• CDC researchers should focus on science and not on the concerns of patient 
groups; other groups may need to step in and assist DVBID with public interface. <<<

Discussion:  

 

 Dr. Lemon reiterated that the building should be completed sooner rather than 
later.  He asked Dr. Petersen to provide the Board with a business plan to be used 
to develop recommendations. Dr. Petersen informed him that a business plan is 
being developed but is not yet available. 

 Dr. Neill expressed the need for more detailed information regarding build-out of 
the phase I “shell” facility before the Board can support the completion of the 
laboratory building. Dr. Schuchat noted that NCID believes the build out of the 
facility is important; however, funding is lacking. The agency is not pushing HHS 
for additional funding at this time. 

 Dr. Eberhart stated that inappropriate laboratory testing and treatment are 
occurring in many states. Commonalities throughout the states should be 
identified. Dr. Quinlisk concurred; she receives e-mails from constituents asking 
why the state health department does not agree with their private doctors. Many of
these constituents can not be convinced by science; therefore, accurate 
information should be distributed to clinicians. 

>>>• Dr. Stamm commented that rogue guidelines are legitimizing long-term treatment 
for chronic Lyme disease; as long as these guidelines can be accessed, this type of 
treatment can be legitimized. <<<

 The breakout group also discussed the concept of “breaking down the walls” 
between different CDC organizations. The group members would like CCID and 
NCID leadership to review the proposed organization for viral and rickettsial 
diseases and consider aligning these subject areas with vectorborne infectious 
diseases. Doing so may reduce redundancy. Dr. LeDuc commented that aligning 
programs can present logistical problems, as some activities are better placed at 
the Ft. Collins campus, whereas others function better in Atlanta.  

 The issue of emerging vectorborne diseases was raised. These diseases should be 
recognized in the bioterrorism arena, along with other natural agents that could 
become a substantial public health threat within the United States. Resources 
should be appropriately allocated

 Dr. LeDuc added that NCID recognizes the need for new policy guidelines 
regarding transplantation. Recently, rabies has been transmitted from organ 
donors to their recipients. A policy for tracking this type of transmission must be 
defined. 

Dr. Granger expressed appreciation to the Board for including USDA in its 
discussions.  USDA is interested in tickborne diseases, particularly because these 
diseases cause disease in cattle. The agency is examining tick collections and is 
trying to isolate agents at a Ft. Collins facility. This presents an excellent 
opportunity for synergy between USDA and CDC’s DVRD. USDA and CDC 
have a different focus on achieving the same mission; collaboration could be 
beneficial to both agencies. Dr. Lemon concurred that the agencies should work 
together --- such a collaboration could help link animal and human health.  


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Is the CDC Ignoring Their Mission?  You decide...


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