Presented to the California Senate Committee On Health And Human Services February 25, 2004 Steven Harris, MD

1. LYME DISEASE: ISSUES IN DIAGNOSIS AND TREATMENT FOR UNDERSERVED AND RURAL COMMUNITIES Presented to the California SenateCommittee On Health And Human ServicesFebruary 25, 2004Steven Harris, MD

2. Rural and underserved populations already feel a loss of control in their lives. Lyme Disease solidifies their powerlessness. LYME DISEASE IS HAVING A PROFOUND IMPACT ON THE RURAL & UNDERSERVED POPULATIONS • Many of these patients go undiagnosed. • Most of these patients do not receive adequate treatment even after being diagnosed. • We see several of these patients relapsing. • End-Game for these patients is • to become another disability statistic • to become a drain on family and state resources. • to lose control over their bodies and cognitive abilities.

3. CASE STUDY #1: Patient Remains Undiagnosed For 18 years 100% bullseye Tick bite w/ rash: Fort Bragg, CA Athletic, successful, thriving CPA practice Loss of bladder control Loss of balance, slow body movements 75% Diagnosis of ALS after seeing several specialists from UC Davis and UCSF Spasticity , severe fatigue, weakness and use Health Status of a cane ALS specialist in Michigan changes multisystem atrophy diagnosis to 50% Use of walker, slurred speech, body jerks out of control. CPA practice cut down to 15 hours / week Falls frequently with walker, very minimal control of movements, speech almost unintelligible, swallowing difficulty. CPA practice cut down to 5 hours / week Lyme Disease 11/03 Diagnosed with 25% 1986 2003 Timeline Patient health deteriorated unnecessarily due to physicians Lyme unwillingness to consider as the diagnosis.

4. CRITICAL QUESTIONS FOR THE SENATE COMMITTEE: DIAGNOSIS • Is it adequate to allow state licensed physicians to learn about Lyme Disease on their own and arrive at their own personal conclusions regards its presence and proliferation in the State of California? • What can be done to improve reporting accuracy of infected ticks and Lyme Disease cases? • What is the cost to the State of California for patients who actively have Lyme Disease that go undiagnosed? • What are the implications of poor diagnosis on further transmission to spouses, creating a larger population of infected persons?

5. Patient health deteriorated unnecessarily due to physicians unwillingness to consider long-term antibiotic treatments at higher than ‘normal’ dosages. CASE STUDY #2: Patient Receives Inadequate Treatment 100% Tick bite: Kern CountyHealthy Communications Engineer Back to 100% HealthFinished antibiotics Symptoms Return w/in 1 month Diagnosed with Lyme24 days of antibiotics given 75% Worsening fatigue, depression and arthritis Health Status 50% Severe arthritis, abdominal pain, inability to concentrate, failure at work 25% Treatment That Patient Received Treatment Patient Should Have Received 1999 Timeline 2003

6. CRITICAL QUESTIONS FOR THE SENATE COMMITTEE: ADEQUACY OF TREATMENT • Can state adopted guidelines for Lyme Disease treatment improve the recovery of patients in underserved & rural populations? • What can be done to improve physician education on the most current knowledge and research regarding Lyme Disease? • What is the cost to the State of California for patients who do not reduce or eliminate their Lyme Disease symptoms?

7. Patient health deteriorated unnecessarily due to insurance provider’s unwillingness to consider Lyme Disease as chronic and therefore unjustified as a medical need for treatment. CASE STUDY #3: Patient Treatment Disrupted Due To Insurance Denial Of Medical Necessity 100% Tick bite: Fallbrook, San Diego County Patient stabilizes Trial of medicine stoppage for assessment & testing purposesRapid relapse 75% Insurance denial of IV treatmentRapid Relapse IV medication begins rapid recoveryInsurance only pays for 1 month 70% Vision Loss, loss of balance, loss of bladder controlDiagnosed with MS Health Status 50% Vision normal after 2 years of treatment Rapid recovery Begins to recover after restarting oral meds 25% Out of pocket medical payments with medical assistance from RocheIV Treatment started again Lyme Diagnosis and Treatment 1995 Timeline 2003

8. CRITICAL QUESTIONS FOR THE SENATE COMMITTEE: CONTINUITY OF TREATMENT • Can state adopted guidelines for Lyme Disease treatment improve the continuity of medically necessary care? • What can be done to educate insurance providers on the total long-term cost of an untreated Lyme patient versus a treated patient? • Do patients have the right to choose between the two schools of thought regarding Lyme treatment?

9. Patient health deteriorated, becomes unable to work and becomes a major drain on family and state resources. CASE STUDY #4: Patient Becomes Another Statistic In State Assistance and Disability Tick bite w/ bullseye rash Humboldt, CA Timber Faller Ex-Marine Sharpshooter

10. CRITICAL QUESTIONS FOR THE SENATE COMMITTEE: END GAME • How many patients are unable to work in California due to Lyme Disease? • Which occupations are most at risk of contracting Lyme and how does an excess loss of park rangers, firefighters, animal workers and land developers affect state activities and budget allocation? • If we can positively affect patient outcomes, decrease disability expenditures and secure the workforce, what are the external and internal obstacles to structuring and implementing a plan?

11. California can once again lead the nation in healing the sick and save money! CALIFORNIA CAN IMPROVE THE ENVIRONMENT FOR LYME DISEASE PATIENTS IN RURAL & UNDERSERVED POPULATIONS • Many of these patients go undiagnosed. • Increased Physician Education and Mandatory Laboratory Reporting • Most of these patients do not receive adequate treatment even after being diagnosed. • California Medical Board Support Of Lyme Disease Treatment • We see several of these patients relapsing. • Lyme Bill Mandating Patient Coverage For Treatment • End-Game for these patients is • to become another disability statistic • to become a drain on family and state resources. • to lose control over their bodies and cognitive abilities. • Implement All Of The Above AND Increase Resources To Support Early Detection