BILL NUMBER: SB 2097 ENROLLED BILL TEXT PASSED THE SENATE AUGUST 29, 2002 PASSED THE ASSEMBLY AUGUST 22, 2002 AMENDED IN ASSEMBLY AUGUST 1, 2002 AMENDED IN ASSEMBLY JUNE 12, 2002 AMENDED IN SENATE MAY 23, 2002 AMENDED IN SENATE MAY 1, 2002 AMENDED IN SENATE APRIL 17, 2002 INTRODUCED BY Committee on Health and Human Services (Senators Ortiz (Chair), Battin, Chesbro, Escutia, Figueroa, Haynes, Kuehl, Morrow, Polanco, Romero, Vasconcellos, and Vincent) APRIL 1, 2002 An act to amend Sections 104190, 104191, 104192, and 104193 of the Health and Safety Code, relating to communicable diseases. LEGISLATIVE COUNSEL'S DIGEST SB 2097, Committee on Health and Human Services. Lyme disease. Existing law establishes the Lyme Disease Advisory Committee in the State Department of Health Services composed of specified members appointed by the Director of Health Services. Existing law requires the department and the committee to perform various functions and duties with respect to, among other things, the dissemination of information regarding Lyme disease to the public and the medical community. This bill would expand the membership of the Lyme Disease Advisory Committee, and would require the committee to establish a subcommittee from its membership for purposes of revising the Lyme disease reporting system. It would also expand the duties of the department with respect to Lyme disease prevention and data collection. THE PEOPLE OF THE STATE OF CALIFORNIA DO ENACT AS FOLLOWS: SECTION 1. (a) The Legislature finds and declares all of the following: (1) The enactment of Senate Bill 1115 (Ch. 668, Stats. 1999), established the Lyme Disease Advisory Committee and information program in order to publicize information on Lyme disease, a bacterial infection, as a major public health problem in California. (2) Despite current efforts, Lyme disease remains a significant problem for numerous reasons, including insufficient information and the lack of universally effective diagnostic tests or treatment protocols. The absence of positive laboratory proof is not conclusive proof of the absence of Lyme disease. (3) Not all people who are bitten by a Western black-legged tick, which is a type of tick capable of carrying Lyme disease, realize that they have been bitten. An actuarial study by the Lyme Disease Foundation, Inc., and the Society of Actuaries found that, of 503 physician-diagnosed Lyme disease patients, only 30 percent realized they had been bitten, and 55 percent did not report a rash. Dr. Joseph Burrascano, Jr., M.D., in "The New Lyme Disease Diagnostic Hints and Treatment Guidelines for Tick Borne Illnesses," twelfth edition, 1998, reported that erythema migrans, the rash that is diagnostic of Lyme disease, was present in fewer than one-half of the Lyme disease patients. People who develop this rash, which is an initial indicator of Lyme disease, should seek immediate antibiotic treatment while the rash is visible and a correct diagnosis can be made. (4) Treatment failures occur in all stages of Lyme disease, but if diagnosed and treated early, the chance of cure remains high. If not diagnosed and treated in time, complications may occur, treatment is more difficult, and progressive disability may result. The persistence of Lyme disease is supported by data in peer reviewed scientific literature. In later stages of the disease, if antibiotic therapy is terminated before active clinical symptoms have cleared, relapse is likely. Prolonged antibiotic treatment, both oral and intravenous, may be necessary. (5) Some individuals affected by the advanced stages of Lyme disease have suffered irreparable damage to their health, careers, and family. Musculoskeletal arthritis and cardiac and neurological symptoms, including joint inflammation and pain, arthritis, irregular heartbeat, facial palsy, severe fatigue, inability to concentrate, and memory loss, are common in these individuals. The neurological symptoms are at times mistaken for multiple sclerosis or early Parkinson's disease. Many victims suffer permanent physical or mental damage, or both, as a result of misdiagnosis, ignorance of the disease, and lack of effective treatment. Lyme disease may be fatal. (6) The key problems of undertreatment and misdiagnosis are in part due to the need for further scientific development and understanding of Lyme disease. (7) Some doctors and insurers claim that if a month of antibiotic treatment fails to cure a patient, then the initial diagnosis of Lyme disease was incorrect. This attitude is the result of incomplete reporting of response to extended antibiotic treatment in the medical literature, as well as the inability of many physicians to correctly diagnose Lyme disease and to monitor patient response to treatment with a laboratory test. (8) While the federal Centers for Disease Control and Prevention (CDC) began to collect data on Lyme disease in 1981 and designated Lyme disease as a nationally notifiable disease in 1990, a uniform, nationally recognized case definition was not adopted until 1991. The number of new Lyme disease cases reported per year increased from 226 to 9,344 in that period. Between 1992, the first year for which consistent and comparable nationwide surveillance data were available, and 2001, the reported number of Lyme disease cases increased from 9,470 to a record level of 17,730, which is an increase of 87 percent over the last decade. The increase in reporting is a reflection of the improved reporting standards, the national application of those standards, and the increased incidence of Lyme disease. Lyme disease is now a reportable disease in all 50 states. The CDC now states that Lyme disease accounts for more than 95 percent of vector-borne illness in the United States. In January 2002, the CDC also reported that Lyme disease had reached record levels, with 17,730 new cases recorded in 2001. Even so, the CDC believes that only one in 10 cases are actually reported. In 1998, the State of Connecticut designated Lyme disease a laboratory as well as a physician reportable disease. In 2001, the IgeneX, Inc. laboratory in Palo Alto, California, alone had test results of 374 unduplicated new positive Lyme disease cases. However, only 93 new cases were recorded that year by the State Department of Health Services. Thus, despite the fact that over 10 percent of the national population reside in California, new Lyme disease cases reported in California accounted for only one-half of 1 percent of the national total, indicating very substantial underreporting and also that the state reporting procedures and criteria for Lyme disease are in need of revision. The Senate of Texas, in issuing its November 2000 report on the Prevalence of Tick Borne Illness noted "the rate of occurrence of tick-borne illness in the United States has increased dramatically over the last few years. This growth is second only to AIDS/HIV among infectious diseases." Cases of Lyme disease have now been reported in 54 California counties. (9) The Western black-legged tick has been found in 55 of the 58 California counties, but is most common in the humid coastal areas and on the western slope of the Sierra Nevada range, including areas in southern California. Thus, the risk of acquiring Lyme disease varies by geographic area of exposure. Of the cases of Lyme disease in California for which the county of exposure was reported in the year 2000, four counties accounted for nearly 40 percent of those cases. (10) Lyme-infected ticks or nymphs have been identified in 41 counties in California to date. However, only one county in California, Mendocino County, has been adequately assessed for Lyme disease risk to date, and the risk of infection from the nymph is even greater than from the adult tick. (b) It is the intent of the Legislature that accurate information on tick-borne illness be included in the curricula of all state medical, veterinary, and nursing schools and of all continuing medical education courses for health care practitioners and school nurses. SEC. 2. Section 104190 of the Health and Safety Code is amended to read: 104190. As used in this article the following definitions apply: (a) "Disease" means Lyme disease recognized by the presence of the spirochete (Borrelia burgdorferi), a spiral-shaped bacterium, in the human body, or coinfection with tick-borne diseases such as babesiosis or ehrlichiosis. (b) "Lyme Disease Support Network" means the groups organized through hospitals and volunteer organizations to counsel and provide support to those individuals who have contracted the disease. SEC. 3. Section 104191 of the Health and Safety Code is amended to read: 104191. (a) There is hereby created in the department the Lyme Disease Advisory Committee composed of, but not limited to, the following members: (1) One who is a member of the board of directors of the Lyme Disease Resource Center. An alternative resource center board member may attend in place of this member if the member is unable to attend due to illness. (2) Three who are Lyme disease patients, with a preference for the following distribution: (A) One from the Lyme Disease Support Network. (B) One who has successfully been treated in the early stages of the disease. (C) One who has been under active treatment for the disease for at least three years. (3) Two from the California Medical Association who are practicing physicians who are knowledgeable of, and whose practice includes the treatment of, both early- and late-stage Lyme disease. These representatives shall be from different geographic areas of the state, preferably one from northern California and one from southern California. (4) One local health officer. (5) One who is a university or research scientist, preferably one with acknowledged expertise of the entomology of the Western black-legged tick. (6) One who is a university immunology or research scientist, preferably one with acknowledged expertise in spirochetes and related infectious diseases. (7) One representative from the department in a scientific or management position. (b) The Lyme Disease Advisory Committee shall meet no less than three times a year and the committee may, from its own membership, elect its own chair. (c) On an annual basis, the committee shall conduct an assessment of its membership, and recommend any needed changes to the director. (d) To facilitate a cohesive working relationship among committee members and an additional sense of stability to the committee's composition, each appointed member shall serve a three-year renewable term unless the member is removed by the director pursuant to subdivision (g). The three-year terms for both current and new members shall commence on January 1, 2003. (e) (1) The committee shall designate a subcommittee of its members to review current reporting procedures and recommend changes in order to simplify, facilitate, and expedite a more accurate and complete Lyme disease reporting system. (2) In order to facilitate accomplishment of the committee's activities using existing resources of the department, the committee may consult with and advise department staff regarding the prioritization of other Lyme disease-related work, or the division of Lyme disease-related work between the department and, on a volunteer basis, individual committee members. (f) When a revised reporting system has been developed and recommended to the department, the functions of the subcommittee shall be terminated and its functions assumed by the committee, which may recommend any further change as it deems appropriate consistent with evolving tick infectivity data, the incidence of Lyme disease, and advances in its effective diagnosis. (g) Members of the committee shall be appointed by, and serve at the pleasure of, the director. In making these appointments, the director shall consider recommendations forwarded by the Lyme Disease Resource Center. (h) Each member of the committee shall serve without compensation or reimbursement, although a member may be eligible for reimbursement if his or her participation would impose a financial hardship. Reimbursement shall be limited to expenses for travel and necessary internal communication incurred by the member in the performance of his or her duties on the committee. (i) The meetings of the committee shall be publicly announced at least one month prior to a meeting, and all meetings shall be open to the public. SEC. 4. Section 104192 of the Health and Safety Code is amended to read: 104192. (a) The Lyme Disease Advisory Committee shall advise and make recommendations to the department regarding subjects including, but not limited to, all of the following: (1) The content and geographic distribution of Lyme disease educational materials. (2) How best to provide information and outreach to the medical community. (3) How best to provide information and outreach to the general public. (4) Populations at risk of contracting Lyme disease. (b) The committee shall review and make recommendations on, prior to their submission for publication, all educational and media materials developed by the department bearing on Lyme disease that are intended for health care practitioners or the general public. SEC. 5. Section 104193 of the Health and Safety Code is amended to read: 104193. The department shall do all of the following: (a) Establish a Lyme disease information program that provides educational materials and information services on Lyme disease to the general public and the medical community. The Lyme disease information program shall provide information on all of the following: (1) The disease in general, including its symptoms. (2) Activities that increase one's risk of contracting the disease. (b) Promote the ways to protect oneself from contracting the disease, utilizing current standards and recommendations developed by the federal Centers for Disease Control and Prevention, including the use of protective clothing and tick repellants such as an acaricide or pesticide sprayed on clothing before being worn. Protective clothing includes light-colored long pants and long sleeves. (c) Not adopt rigid diagnostic or treatment limitations. (d) With the recommendation of the Lyme Disease Advisory Committee, and to the extent that departmental resources allow, consider the potential of new diagnostic and treatment procedures that have scientific foundation, particularly those that may be effective for the later stages of Lyme disease. (e) Provide detailed but broad and inclusive information regarding Lyme disease, its varied and common symptoms, and its treatment to physicians and surgeons, including the use of both oral and intravenous antibiotics, and other evidence-based effective treatments, as they are recognized and publicly available. (f) To the extent that departmental resources allow, the department shall provide the information specified in subdivision (e) to veterinarians, nurse practitioners, and school nurses. This provision of information may be accomplished by the department by providing the information to professional associations representing these providers. If the department provides the information to professional associations, the department shall request that these professional associations make the information available to association members who request the information. (g) To the extent that departmental resources allow, the department shall make the information specified in subdivision (e) available on its Internet Web site in order to facilitate accessibility of information and provider education. (h) Identify those segments of the population that are especially at risk of contracting Lyme disease and may provide workshops, with detailed information on the disease in those areas or communities, considering recommendations for these workshops provided by the Lyme Disease Advisory Committee. (i) In collaboration with interested counties, communities, research scientists, health care practitioners, or members of the Lyme Disease Advisory Committee, the committee shall encourage the conduct of research and its funding to identify the risk of Lyme disease in counties or areas of California where Lyme disease is considered to be endemic. (j) Provide information to the Occupational Safety and Health Standards Board about risk factors for exposure to Lyme disease. (k) Encourage the use of integrated pest management to control and reduce tick populations. (l) On or before December 15, 2003, and annually thereafter, to the extent that departmental resources allow, compile the interim year reports that have been previously shared with the Lyme Disease Advisory Committee and issue a consolidated report to be submitted to each member of the Senate Committee on Health and Human Services and each member of the Assembly Committee on Health. This report may include information on any consequential changes in the incidence of Lyme disease, changes in reporting procedures to facilitate the reporting of Lyme disease by physicians and other licensed health practitioners and school nurses, and changes in known effective treatment. These annual reports to committee members should be accompanied by pamphlets, brochures, and articles published by staff of the department and intended for education of members of the public or medical community. These annual reports shall be subject to feedback, and, if possible, prior review, by the Lyme Disease Advisory Committee.