CDC HHS Position

Are They Working Against Lyme Patients and Those Helping Them?

You decide...




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


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...

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