C
Summary of Public Comment on Agenda

As part of its charge, the Institute of Medicine (IOM) Committee on Lyme Disease and Other Tick-Borne Diseases: the State of the Science was requested to include broad input from the public. To meet this goal, the committee held an open session on April 29, 2010, and four subsequent listening sessions. These sessions were structured to allow the public to briefly suggest topics of interest and speakers for the committee’s workshop. The four sessions reached four geographic regions within the United States with high rates of Lyme disease and other tick-borne diseases. These sessions allowed participation from individuals who could not travel to the open session due to personal and financial hardships. Listening session participants came from Arizona, California, Connecticut, the District of Columbia, Florida, Georgia, Illinois, Iowa, Kansas, Kentucky, Maryland, Massachusetts, Michigan, Minnesota, Missouri, Nebraska, Nevada, New York, North Carolina, Oklahoma, Oregon, South Carolina, Tennessee, Texas, Washington, Wisconsin, and Native American tribes. During these sessions, the public were allowed to comment uninterrupted for up to 3 minutes, sharing personal experiences, suggesting topics to be considered by the committee, and offering the names of individuals whom they thought would be able to speak to the committee regarding Lyme disease and other tick-borne diseases. Views presented from the listening sessions do not represent conclusions from the committee.



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C Summary of Public Comment on Agenda As part of its charge, the Institute of Medicine (IOM) Committee on Lyme Disease and Other Tick-Borne Diseases: the State of the Science was requested to include broad input from the public. To meet this goal, the committee held an open session on April 29, 2010, and four subsequent listening sessions. These sessions were structured to allow the public to briefly suggest topics of interest and speakers for the committee’s work- shop. The four sessions reached four geographic regions within the United States with high rates of Lyme disease and other tick-borne diseases. These sessions allowed participation from individuals who could not travel to the open session due to personal and financial hardships. Listening session participants came from Arizona, California, Connecticut, the District of Columbia, Florida, Georgia, Illinois, Iowa, Kansas, Kentucky, Maryland, Massachusetts, Michigan, Minnesota, Missouri, Nebraska, Nevada, New York, North Carolina, Oklahoma, Oregon, South Carolina, Tennessee, Texas, Washington, Wisconsin, and Native American tribes. During these sessions, the public were allowed to comment uninterrupted for up to 3 minutes, sharing personal experiences, suggesting topics to be considered by the committee, and offering the names of individuals whom they thought would be able to speak to the committee regarding Lyme disease and other tick-borne diseases. Views presented from the listening sessions do not represent conclusions from the committee. 509

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510 CRITICAL RESEARCH NEEDS IN TICK-BORNE DISEASES KEY POINTS FROM LISTENING SESSIONS The first listening session targeted Georgia, North Carolina, and South Carolina and included participants from Florida, Georgia, Kentucky, Mary- land, South Carolina, Tennessee, Virginia, and Wisconsin. Main topics gleaned from the listening session are • Detecting and responding to tick-borne diseases remain challenging. Cases of STARI in the Southeast are poorly identified because there is no specific test; cases are hard to distinguish from Lyme disease and are often dismissed. Some Borrelia strains and species may not be detectible; there are more Borrelia strains in the South. • There needs to be a regional Western blot using southern strains and species. • Medical providers remain undereducated about tick-borne diseases. Health providers frequently dismiss patients and see positive cases as false—many are inadequately trained to diagnose tick-borne dis- eases. Providers also need to learn the vector biology of ticks and wildlife hosts. False positive cases of Lyme disease and other tick- borne diseases lack follow-up studies or evidence to confirm that it is a false case. The use of antibiotics, timing and fluctuating antibodies remain confusing to physicians. Varying criteria to diagnose Lyme disease lead to misinterpretation of lab reports. • There is a need to fund independent, large-scale human studies con- ducted by new researchers in the Southeast. • Cases of Lyme disease cannot be compared across the country be- cause different methodologies are used to detect cases. • Overall, the public lacks awareness of tick-borne diseases. The second listening session targeted Arizona, California, and Texas and included participants from Arizona, California, Georgia, Iowa, Mon- tana, New York, Oklahoma, Oregon, Texas, and Washington. The session highlighted the human face of tick-borne disease infections, definitions of cases and diagnoses, diagnostics, and physician education. Many felt that treatment guidelines did not always provide the relief to their ongoing symptoms. Assessments of clinical guidelines are outside the statement of task for this study. Main topics gleaned from the listening session are • There are varying strains of Borrelia species across geographic regions. • Debates remain on the case definition versus clinical diagnosis of Lyme disease and other tick-borne diseases.

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511 APPENDIX C • Diagnostics on Lyme disease and other tick-borne disease have yet to be improved—specifically, the adequacy of current serology lab tests; current ELISA tests miss nearly half of those with Lyme dis- ease; Western blot test may lead to false results; the timing of tests may conflict with antibiotics regimen. • There is insufficient research on persistence and relapse of Lyme disease and other tick-borne diseases. The third listening session targeted Michigan, Minnesota, and Wiscon- sin and included participants from Georgia, Illinois, Iowa, Kansas, Michi- gan, Minnesota, Missouri, Nebraska, Texas, and Wisconsin. Main points outlined in session from Michigan, Minnesota, and Wis- consin include • Existing diagnostic tests lack reliability, validity, sensitivity and spec- ificity (serologic sensitivity)—the role of skin biopsy is unknown. • Physicians frequently overlook co-infections that occur with the onset of Lyme disease. • Healthcare providers need to be educated on the classic symptoms of Lyme disease. • Research needs to examine the clinical significance of intracellular mechanisms (pathogenesis). • Late neurological diseases may be triggered by Lyme disease and other tick-borne diseases. • There is insufficient research on persistence and relapse of Lyme disease and other tick-borne diseases. • Studies on behavioral change and non-pharmaceutical measures to treat Lyme disease (e.g., alternative and complementary therapy) are needed. The final listening session was designed to engage the Native American tribes of Oklahoma and expanded to include the Native American popu- lation across the nation. The session included participants from Arizona, California, Connecticut, the District of Columbia, Florida, Iowa, Maryland, and Massachusetts. Main points from the session include • The Borrelia organism has changing morphology. • There are alternative animal hosts for tick-borne diseases. • Signs and symptoms associated with the Borrelia organism lack specificity.

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512 CRITICAL RESEARCH NEEDS IN TICK-BORNE DISEASES • Existing diagnostics of the Borrelia organism remain inadequate. Resources are limited to develop a point-of-care test to improve clinical diagnosis in real time. • State and local health departments should work with Native Ameri- can tribes to develop behavioral, cultural, and educational efforts to prevent tick-borne diseases. • There may be genetic differences in susceptibility to tick-borne diseases. The committee greatly appreciates all who have participated during the listening sessions. Despite time limitations, the listening sessions strength- ened the understanding of the current state of Lyme disease and other tick-borne diseases. The committee used information provided during the listening sessions to commission a paper on challenges to diagnostic devel- opment and the management of co-infection and past infections. SUMMARY OF PUBLIC COMMENTS PRIOR TO THE OCTOBER WORKSHOP In reviewing the submissions to the Public Access file for the Commit- tee on Lyme and Other Tick-Borne Diseases: The State of the Science, the following major themes were found among the submissions: • the strong desire for the committee to know and understand what it is like for those living with Lyme disease and other tick-borne dis- eases in their day-to-day lives and the impact of being diagnosed or not having been diagnosed had on their physical and mental health, their economic situation, and their relationships in the community and with their health care providers, etc. • the belief that the IDSA guidelines are immensely flawed and need to be rewritten and expanded. One commenter indicated the possibility of conflict of interest with IDSA and CDC, and which researchers get funded • the need for improved diagnostics and testing. (There is a lot of frustration with the Western blot test and the CDC guidelines.) • the strong push for more research and increased funding for Lyme disease especially in areas such as disease transmission, pathogenesis, new treatments and why old treatments fail, co-infection, persis- tence, and strain variability • emphasis on physician and community education about Lyme dis- ease and the need for physicians willing to treat for Lyme disease in areas that have not been recognized as endemic

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513 APPENDIX C • the possibility of and the need to look for alternative treatments and the use of different antibiotics other than doxyxyline and cefriaxone • the lack of a national reporting standard and how different case definitins impact those in areas labeled “non-endemic” • the need for more research into tick biology and the processes by which pathogens invade and multiple in the human host Other comments raised the following issues: • impact of vaccines and vaccine research adversely affecting the study of Lyme disease • a possible link between Lyme disease and autism • alternative modes of infection (e.g., bees and fungi) • the need for environmental controls (e.g., decreasing the deer popu- lation in largely endemic areas) • the need to look at special populations such as children, people with occupational risk of exposure, and low-income individuals • genetic/immune factors that may cause the disease to vary from person-to-person • a desire for an international standard for Lyme disease and the pathogens capable of transmitting Lyme disease in humans In addition to these comments, the following individuals were suggested to give testimony to the committee because of their expertise in the area: • Raphael Stricker (ILADS) • Benjamin Luft (SUNY–Stony Brook) • Steven Schutzer (University of Medicine and Dentistry, NJ) • Steven Phillips • Brian Fallon (Columbia University) • David Cadavid (Biogen Idec) • Allison Delong (Brown University) • Kerry Clark (University of North Florida) • Reinhard Strubinger (Ludwig-Maximilians-Universität) • Elizabeth Maloney • Dave Martz • Eugene Davidson (Georgetown University Medical Center) • Joseph Burrascano • David Volkman (SUNY–Stony Brook) • Steven Barthold (University of California Davis) • Mario Phillip (Tulane University) • Sam Donta

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514 CRITICAL RESEARCH NEEDS IN TICK-BORNE DISEASES • Robert Lane (University of California Berkeley) • Ellen Stromdahl (US Army Center for Health Promotion and Preven- tive Medicine) • Judith Miklossy (University of British Columbia) • Kenneth Leigner • Eva Sapi (University of New Haven) • Karen Newell (Texas A&M) • Cheryl Koopman (Stanford University) • Dan Cameron (International Lyme and Associated Disease Society) • James Oliver (Georgia Southern University) • John Aucott (Johns Hopkins) • Joseph G. Jemsek (Washington, DC) • Norton L. Fishman (Rockville, MD)