Update 7B – Lyme Corps Assessment Brief – Part 2 of 2 Greetings from Jenna, Today, as promised I share Part 2 of 2 of my CDC Lyme Corps Assessment Brief. Just a reminder - I have shared my Brief and recommendations for course correction, with many persons who I understand to have some measure of responsibility for the Lyme Corps program, such as the persons managing and implementing the program. CDC Director Thomas Friedan has been included in certain key correspondences since they began on January 14, 2016. To date, I have received two general responses that did not provide answers to my inquiries. This brief has five main findings. Yesterday I shared Findings 1, 2 and 3. Today I will share Findings 4 and 5 and recommendations. Feedback welcome! Introduction: This is an assessment brief of Lyme Corps, a program conceived and implemented by the Centers for Disease Control and Prevention (CDC) under the National Center for Emerging and Zoonotic Infectious Diseases’ (NCEZID) Division of Vector-Borne Diseases (DVBD). The assessment reviews the program for coherence between its design, stated objectives, intended results and related CDC strategic objectives. The review includes the identification of certain anomalies, unintended consequences and some considerations of economic impact. Background: The Lyme Corps program trains students pursuing health care degrees (MD, RN, MS, etc.) and public health degrees to provide Lyme disease education and outreach to the public and health care providers (HCPs). The Lyme Corps program “seeks new means of educating HCPs and the public about Lyme disease because: (1) recent surveys indicate that provider practices are often inconsistent with current guidelines and (2) inaccurate information about Lyme disease is disseminated broadly through internet forums, social media, and traditional media. ” [Ref 1] Once trained by Lyme Corps, participants’ primary responsibilities include: “(1) educating colleagues; (2) educating HCPs via clinic visits and material dissemination; and (3) increasing public knowledge in-person and online.”[Ref 1] Lyme Corps implementation initiated in 2013 and appears to be on-going. RETURN TO FINDINGS (for FINDINGS 1, 2 and 3 See Update 7A – Lyme Corps Assessment Brief – Part 1 of 2) Finding Four: Lyme Corps does not conform to the CDC’s National Center for Emerging and Zoonotic Infectious Diseases Strategic Plan 2012 – 2017. The NCEZID Strategic Plan 2012 – 2017 states it will: Improve infectious disease surveillance, outbreak response, and epidemiology; Strengthen state and local public health systems; and Leverage partnerships, policy, and effective communication messaging to protect the health of the public. The misinformation promoted via Lyme Corps will undermine state and local public health systems and the outbreak response to the Lyme epidemic. Furthermore, Lyme Corps messaging will not protect the health of all persons with Lyme. It will increase the numbers of misdiagnosed patients who go on to develop Stage 3 Lyme, a stage that is characterized by significant disability and pain, low quality of life and can result in death. Finding Five: The Lyme Corps program can be characterized as fiscally irresponsible. Currently, many Stage 3 Lyme patients are unable to access any treatment that goes beyond the IDSA recommended protocol for 28 days of antibiotics. The program’s promotion of IDSA guidelines, its exclusion of ILADS guidelines, and other misinformation, compound this situation. These program actions will increase the number of persons who develop serious health complications from Lyme. A 2015 publication in the Public Library of Science estimated that medical costs generated by Lyme, over a one year time period, to be an additional $712 million to $1.3 billion a year. [Ref 8] Survey findings in the 2011 Health Policy Journal publication found that “a quarter of [Lyme patients] respondents had been on public support or received disability benefits due to Lyme disease symptoms.”[Ref 9] An April 2006 publication in Emerging Infectious Diseases showed the direct and indirect costs of Lyme disease averages $8,172 per patient, or $10,769 when adjusted for inflation. The annual costs of 300,000 new cases per year can be calculated at more than $3.2 billion. [Ref 10] Complications from Lyme convert to significant U.S. health care system costs and are likely to increase the burden to our unemployment, disability, welfare, Medicaid and Medicare systems. Lyme Corps’ promotion of outdated substandard IDSA guidelines and other misinformation will further inflate these costs by increasing the number of persons requiring specialized medical care and state and federal benefits. In summary, Lyme Corps appears to be an ill-conceived stealth program that does not conform to federal standards for transparency of non-classified activities. Lyme Corps has far-reaching negative fiscal impact. Lyme Corps is training its participants to broadly disseminate misleading and inaccurate information about Lyme disease. Lastly, Lyme Corps does not meet its own stated objectives nor does it conform to the CDC’s NCEZID Strategic Plan 2012 – 2017. Lyme Corps requires significant course correction. They include: (1) A complete revision of all Lyme Corps training materials to: (i) Professionalize presentation of concepts, language and images for core audience, e.g. medically trained Lyme Corps participants; (ii) Reflect the current science-based evidence and understanding of Lyme and identify the knowledge gaps; and (iii) Promote the ILADS patient-centered treatment guidelines as conforming to the high evidentiary standards of the Institute of Medicine and NCG criteria. (2) Provide publicly accessible information regarding Lyme Corps funding, calendar, activity roll-out and partnering institutions. (3) Lyme Corps activities to include liaising with registered 501 c3 patient-centered Lyme organizations for coordination and expansion of public educational outreach efforts. [Ref 1] See link https://nphic.confex.com/cdc/nphic14/webprogram/Paper35413.html [Ref 8] Health care costs, utilization and patterns of care following Lyme disease 2015 written by Emily Adrion, MSc; John Aucott, MD; Klaus Lemke, PhD; and Jonathan P. Weiner, DrPH - Johns Hopkins Bloomberg School of Public Health See link - http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0116767 [Ref 9] Healthcare access and burden of care for patients with Lyme disease: A large United States survey, Health Policy Journal September 2011 authors Lorraine Johnson, Alexandra Aylward, Raphael B. Stricker Volume 102, Issue 1, and Pages 64–September See link - http://www.healthpolicyjrnl.com/article/S0168-8510 (11) 00101-1/fulltext [Ref 10] Economic Impact of Lyme Disease 2006 Xinzhi Zhang, Martin I. Meltzer, César A. Peña, Annette B. Hopkins, Lane Wroth, and Alan D. Fix See link - http://wwwnc.cdc.gov/eid/article/12/4/05-0602_article