Report on Lyme Disease

1. Report on Lyme Disease Response to PL 2015, R431 and PL 2014, R087 March 3, 2016 Nicole Alexander-Scott, MD, MPH

2. Presentation Overview • Lyme disease overview • Lyme disease in Rhode Island • Medical community and Lyme disease • Analysis of Lyme disease clinical guidelines • Insurance coverage for Lyme disease • Current and long-term goals

3. Lyme Disease Overview • Caused by bacterium Borreliaburgdorferi • Spread through bite of infected black-legged (deer) tick • In most cases, a tick must be attached for 36 to 48 hours or more for Lyme disease bacterium transmission

4. Lyme Disease Symptoms • Typical initial symptoms • Bull’s-eye rash (erythema migrans) in 60%-80% of patients within 7 to 30 days of tick bite • Non-specific symptoms: fever, tiredness, headache, joint pain, muscle pain • Late manifestations (weeks – months after bite) • Arthritis (particularly in the knee joint) • Neurologic problems (Bell’s Palsy) • Cardiac issues • Meningitis • Chronic Lyme/Post Treatment Lyme Disease Syndrome

5. Topic 1Analysis of Current Levels of Lyme Disease in Rhode Island

6. Lyme Disease in Rhode Island2008-2015 Passive Surveillance Active Surveillance *2015 data are provisional

7. Lyme Disease by Age, 2014 • Adults ages 50-59 had the highest rate • People ages 60-69, 10-19 had the second highest rate

8. Lyme Disease by Sex • Males had higher counts and rates of Lyme disease than females • Consistent with 10-year trend of national data

9. Lyme Disease by Month • Lyme disease peaks in the summer when people spend more time outside • Nationally, Lyme disease peaks in the summer too • 2014: 59% of Lyme disease cases were June - August

11. Topic 2Response of the Medical Community in Treating Lyme Disease

12. Physician Survey • November 2015 – January 2016 • Surveyed primary care physicians • Questions about knowledge, attitudes, and practices (diagnostic and treatment) regarding Lyme disease • 211 respondents

13. Physician Survey Respondents’ knowledge • 19% do not know Lyme disease is endemic (widespread) in Rhode Island • 19% do not know how long a tick must be attached in order to transmit Lyme disease • 50% do not know serologic tests for Lyme disease cannot be used to distinguish between active and past infection • 56% do not know all Lyme disease cases, by law, are reportable to RIDOH

14. Physician Survey Respondents’ diagnosing practices • 42% reported offering no patient education about Lyme disease in the office • Test-ordering practices are quite variable • Antibiotic prescribing is quite variable • 32% reported they would prescribe antibiotics to patient who requests it for Lyme disease, even if patient is asymptomatic and has no history of a tick bite

15. Topic 3Analysis of Best Practices in the Treatment of Lyme Disease

16. Summary of Practices for Chronic Lyme/PTLDS

17. Long-Term Antibiotic Therapy Research IDSA/CDC ILADS Observational case series Confirmed diagnosis of Lyme not required for all Most frequent antibiotics used were macrolides and tetracyclines in conjunction with anti-inflammatories Length of therapy: 3 - 6 months No difference in outcomes between seronegative vs. seropositive patients Outcome was patient-reported improvement in symptoms (subjective) • 4 randomized, placebo controlled clinical trials • Outcomes measured using validated scoring scales • No sustained difference in outcome measures between placebo and treatment groups at end of study • Higher rate of adverse events in treatment group vs. placebo group (26% vs. 7%) • Multiple hospitalizations in all studies in treatment group arm for adverse events

18. Topic 4Gaps in Insurance that Affect Access to Treatment of Lyme Disease

19. Insurance Coverage forLyme Disease Treatment • Chapter 5-37.5: requires health plans to provide for Lyme disease treatment • “No physician is subject to disciplinary action solely for prescribing, administering, or dispensing long-term antibiotic therapy for a patient clinically diagnosed with Lyme disease, if this diagnosis and treatment plan have been documented in the patient’s medical record.” • Lyme disease treatments, like other treatments, must be “medically necessary” and “appropriate”

20. Insurance Coverage forLyme Disease Treatment Lyme treatments are generally covered by insurance. Like other diseases/conditions, there are several reasons why treatments might be not covered or partially covered: • Not medically necessary/appropriate • Coding errors • Over-the-counter products • Laboratory/provider is out-of-network • Provider only accepts cash payments • Patient’s employer is self-insured • Deductibles/copays • Other conditions

21. Insurance Coverage forLyme Disease Treatment Patient options if coverage denied • The Rhode Island Department of Health (RIDOH) and the Rhode Island Office of the Health Insurance Commissioner (OHIC) oversee denials and check to ensure that: • Patient due process rights are honored • Decisions made are reasonable • Criteria used to make decisions is sound • Patient can also contact Rhode Island’s toll-free Health Insurance Consumer Support Line (RI Reach): 855-747-3224.

22. Topic 5Current and Long-Term Goals and Strategies to Address the High Incidence of Disease in the State

23. Short and Long-Term Goals • Current Activities • Active surveillance • Public education • Provider education • Future Activities • Continue support for public and provider education • Coordinate with DEM, URI • Coordinate with New England states • Stay current on Lyme research

24. Current Activities • Active disease surveillance • Provider outreach and education • Public awareness and education • Strengthening partnerships

25. Provider Education • Healthcare provider e-newsletters • Individualized education with providers • Comprehensive website for physicians

26. Public Education • One Bite preventioncampaign • Media interviews • Press releases • Website • Social media • Tick tool kit (summer camps)

27. Public Advertising • Posters on buses, Block Island Ferry • Paw Sox (radio show, game-day interviews, fan mailings, jumbo-tron) • Print ads in Rhode Island Summer Guides • Tick safety signs posted at state parks

28. Strengthening Partnerships • Education materials distributed at Great Outdoor Pursuit events • Train-the-trainer workshops for DEM, DOT for tick safety - Educational materials - Signage - Tick-identification magnets - Permethrin (tick repellant) • Paw Sox

29. Long-Term Goals • Promote continued research on diagnosis and treatment of Lyme disease • Coordinate with New England states • Enhance provider outreach and education, emphasizing clinical research updates and innovations in the diagnosis and treatment of tick-borne illness • Maintain active disease surveillance

30. Long-Term Goals • Continue public awareness campaigns, as federal funds allow, and seek partners for additional sustainable, low-cost public awareness opportunities • Increase outreach to those communities most impacted by Lyme • Provide targeted trainings and workshops, based on funding 

31. Conclusion • There is a need to more accurately reflect the burden of disease with increased testing, diagnosis, and reporting • We must continue and enhance education for providers and the public • There are still unanswered questions--we need reliable data and research

32. Questions?

33. CDC case definitions Suspected • A case of EM where there is no known exposure (as defined) and no laboratory evidence of infection (as defined), OR • A case with laboratory evidence of infection but no clinical information available (laboratory report). Probable • Any other case of physician-diagnosed Lyme disease that has laboratory evidence of infection (as defined). Confirmed • A case of EM with a known exposure (as defined), OR • A case of EM with laboratory evidence of infection (as defined) and without a known exposure OR • A case with at least one late manifestation that has laboratory evidence of infection.

34. Key Messages