Are They Working Against Lyme Patients and Those Helping Them?
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
The second topic of discussion among members of the breakout group is Lyme
disease --- particularly the challenges presented by this disease that extend beyond
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
>>>• 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. <<<
• 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
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.
Is the CDC Ignoring Their Mission? You decide...
Health and Human Services Mission: