Presented to the California Senate Committee On Health And Human Services February 25, 2004 Steven Harris, MD LYME DISEASE: ISSUES IN DIAGNOSIS AND TREATMENT FOR UNDERSERVED AND RURAL COMMUNITIES

2 LYME DISEASE IS HAVING A PROFOUND IMPACT ON THE RURAL & UNDERSERVED POPULATIONS 1.Many of these patients go undiagnosed. 2.Most of these patients do not receive adequate treatment even after being diagnosed. 3.We see several of these patients relapsing. 4.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. Rural and underserved populations already feel a loss of control in their lives. Lyme Disease solidifies their powerlessness.

3 CASE STUDY #1: Patient RemainsUndiagnosed For 18 years Patient health deteriorated unnecessarily due to physicians unwillingness to consider Lyme as the diagnosis. Timeline Health Status Tick bite w/ bullseye rash: Fort Bragg, CA Athletic, successful, thriving CPA practice 25% 50% 75% 100% Loss of bladder control Loss of balance, slow body movements Diagnosis of ALS after seeing several specialists from UC Davis and UCSF Spasticity, severe fatigue, weakness and use of a cane ALS specialist in Michigan changes diagnosis to multisystematrophy 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 Diagnosed with LymeDisease 11/03

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 Timeline Health Status Tick bite: Kern County Healthy Communications Engineer CASE STUDY #2: Patient Receives Inadequate Treatment Patient health deteriorated unnecessarily due to physicians unwillingness to consider long- term antibiotic treatments at higher than ‘normal’ dosages. Treatment Patient Should Have Received Treatment That Patient Received Diagnosed with Lyme 24 days of antibiotics given Back to 100% Health Finished antibiotics Symptoms Return w/in 1 month Worsening fatigue, depression and arthritis Severe arthritis, abdominal pain, inability to concentrate, failure at work 50% 25% 75% 100%

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 Timeline Health Status Tick bite: Fallbrook, San Diego County 70% Vision Loss, loss of balance, loss of bladder control Diagnosed with MS Lyme Diagnosis and Treatment Vision normal after 2 years of treatment 50% 25% 75% 100% CASE STUDY #3: Patient Treatment Disrupted Due To Insurance Denial Of Medical Necessity 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. Trial of medicine stoppage for assessment & testing purposes Rapid relapse Begins to recover after restarting oral meds IV medication begins rapid recovery Insurance only pays for 1 month Insurance denial of IV treatment Rapid Relapse Out of pocket medical payments with medical assistance from Roche IV Treatment started again Rapid recovery Patient stabilizes

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 CASE STUDY #4: Patient Becomes Another Statistic In State Assistance and Disability Patient health deteriorated, becomes unable to work and becomes a major drain on family and state resources. 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 IMPROVE THE ENVIRONMENT FOR LYME DISEASE PATIENTS IN RURAL & UNDERSERVED POPULATIONS 1.Many of these patients go undiagnosed. Increased Physician Education and Mandatory Laboratory Reporting 2.Most of these patients do not receive adequate treatment even after being diagnosed. California Medical Board Support Of Lyme Disease Treatment 3.We see several of these patients relapsing. Lyme Bill Mandating Patient Coverage For Treatment 4.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 California can once again lead the nation in healing the sick and save money!