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
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.
[My note- The IDSA Lyme guidelines were updated the following year- 2006. In other words, the CDC tells IDSA to update their 2000 Lyme disease guidelines and they do, then the CDC goes over a decade refusing to remove them from its own website.]
• 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.
[2009- NOTICE of DEATH- "Walter E. Stamm, professor of medicine, former head of the Division of Allergy and Infectious Diseases at The University of Washington, died on December 14, 2009 from melanoma. His wife, Peggy, died in June 9, 2008, also from metastatic cancer." Source]
• 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.
Link:
http://www.cdc.gov/maso/facm/pdfs/BSCNCID/20050512%20BSCNCID%20Minutes.pdf
Last Updated- August 2019
Lucy Barnes
scc