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The Lyme Association of Greater Kansas City, Inc.

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The Lyme Association of Greater Kansas City, Inc.

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    1. 4/2/2012 2 1 The Lyme Association of Greater Kansas City, Inc. Evelyn Steeley, President Ed Olson, 1st Vice President Janet Bain, 2nd Vice President Kathy White, Secretary Ray Schmitz, Treasurer Welcome to our Presentation

    2. 4/2/2012 2 Lyme Association of Greater Kansas City, Inc. A non-profit, {501 (c) (3)} all-volunteer, patient support group serving both Kansas and Missouri

    3. 4/2/2012 Goals of the Lyme Association To provide information and support to victims of Lyme Disease and their families To promote cooperation with the medical community To increase public awareness of tick-borne diseases and their prevention

    4. 4/2/2012 Activities of the Lyme Association Maintains two websites 1) www.lymefight.info 2)http://community.Lawrence.com/orgs/Lymeassociation Provides monthly meetings with guest speakers for victims of Lyme disease Operates a hotline (913) 438-LYME and E-mail address Lymefight@aol.com

    5. 4/2/2012 Activities (continued) Publishes a monthly newsletter, Prime Time Lyme Produces a brochure about Lyme disease Distributes brochures to libraries and physician’s and chiropractic offices

    6. 4/2/2012 Lyme Association Display Table

    7. 4/2/2012 Activities (continued) Mails information packets about Lyme disease upon request Participates in health fairs in schools and community Makes presentations to schools, youth and community groups Provides free education packets and tick removal kits to schools

    8. 4/2/2012 Lyme Disease Education Packet Content Handbook - Lyme disease information and symptom descriptions. Also includes: LDF brochure, Tick-Spread Diseases,16 pages of colored pictures LDA brochure , Lyme {R} Primer, 8 pages LDA brochure, The ABC’s of Lyme disease, 10 pages CD containing four 15 minute presentations, one each for K-4 and 5-6, plus 2 presentations for 7-12 grades

    9. 4/2/2012 Lyme Disease Education Packet Contents (continued) Tick removal kit in a plastic vial, includes: Tick removal tool with instructions Alcohol swabs Zip-lock bag for a removed tick

    10. 4/2/2012 The Handbook, Tick Card and Brochure

    11. 4/2/2012 Education Makes a Difference Tick bites, the usual cause of Lyme disease, can often be prevented if people know what measures to take

    12. 4/2/2012 Education Makes a Difference Prompt treatment can often prevent the disease from becoming chronic and disabling

    13. 4/2/2012 Education Makes a Difference Knowledge of early symptoms and the importance of prompt treatment will motivate people to seek prompt medical care

    14. 4/2/2012 Education Makes a Difference Funding is needed by the Lyme Association to reach their goal of an Education packet in every school in Kansas

    15. 4/2/2012 Education Packets Create Awareness The Lyme Association has given 220 packets to schools in Kansas. Kansas has approximately 2,003 schools. There are about 1,783 schools without packets. The Lyme Association can equip the remaining schools with education packets with a grant of $12,000.00 - $15,000.00.

    16. 4/2/2012 Legislation Recommended Protect doctors from having their licenses threatened by medical review boards for treating chronic Lyme disease with antibiotics Require Insurance Companies to pay for IV antibiotics and other Lyme disease treatment as needed

    17. 4/2/2012 The Lyme Association of Greater Kansas City, Inc. PART TWO Ed Olson, President

    18. 4/2/2012 The Lyme Association of Greater Kansas City, Inc. Lyme disease is present and the number of incidents is increasing in Kansas. The large herds of white tail deer are carriers after they have been bitten by an infected tick. We have many hot-line calls from people whose doctor denies that Lyme disease is present and want to treat them for other conditions. (arthritis, etc)

    19. 4/2/2012 The Lyme Association of Greater Kansas City, Inc. Lyme patients in Kansas are routinely denied adequate treatment by their insurance companies, resulting in debilitating chronic illness, and sometimes death

    20. 4/2/2012 The Lyme Association of Greater Kansas City, Inc. If the disease becomes chronic, longer antibiotic treatment is necessary. Doctors in other states have had their licenses threatened or suspended by medical review boards for treating Lyme disease with antibiotics for more than four weeks

    21. 4/2/2012 The Lyme Association of Greater Kansas City, Inc. It is important that Kansas take action promptly to prevent our situation from deteriorating to the level cited in the Rhode Island “Lyme Diagnosis and treatment Act” (The following slides will display this law)

    22. 4/2/2012 The Lyme Association of Greater Kansas City, Inc. We present the Rhode Island law as an example of how a state has made an effort to solve the growing problem of Lyme Disease. We, the Lyme Association of Greater Kansas City, Inc. suggest, encourage, and recommend that this type of legislation be passed for the state of Kansas ASAP. The concerns outlined in the Preamble are almost identical to the situation in Kansas.

    23. 4/2/2012 Lyme Disease Diagnosis and Treatment Index Of Sections § 5-37.5-1 Short title .§ 5-37.5-2 Preamble .§ 5-37.5-3 Definitions. § 5-37.5-4 Long-term antibiotic treatment. § 5-37.5-5 Mandatory coverage for certain Lyme Disease treatments Effective until December 31, 2004. Rhode Island Lyme Disease Law CHAPTER 5-37.5

    24. 4/2/2012 Rhode Island Lyme Disease Law TITLE 5 Businesses and Professions CHAPTER 5-37.5 Lyme Disease Diagnosis and Treatment SECTION 5-37.5-1

    25. 4/2/2012 § 5-37.5-1 Short title. — This chapter shall be known and may be cited as the “Lyme Disease Diagnosis and Treatment Act.”

    26. 4/2/2012 TITLE 5 Businesses and Professions CHAPTER 5-3 7.5 SECTION 5-37.5-2

    27. 4/2/2012 § 5-37.5-2 Preamble. — WHEREAS, The Governors Commission on Lyme Disease and Other Tick-Borne Diseases (the “Commission”) was formed by executive order in 2002; and,

    28. 4/2/2012 WHEREAS, The General Assembly recognizes the negative impact of Lyme disease on Rhode Islanders; and,

    29. 4/2/2012 WHEREAS, Rhode Island has the second highest number of reported Lyme disease cases as a percentage of population in the United States; and,

    30. 4/2/2012 WHEREAS, The Commission and the General Assembly held hearings and reviewed the medical literature to gain an understanding of the concerns of citizens and the medical community about Lyme disease diagnosis, treatment and prevention; and,

    31. 4/2/2012 WHEREAS, Citizens of Rhode Island diagnosed with chronic Lyme disease experience great difficulty in being diagnosed and treated thereby impairing their access to medical care; and,

    32. 4/2/2012 WHEREAS, The lack of insurance coverage for diagnosis and long-term antibiotic therapies is a major barrier to access to medical care for persons with symptoms compatible with chronic Lyme disease; and,

    33. 4/2/2012 WHEREAS, Physicians whose practices are devoted to treating chronic Lyme disease patients, and who continue to provide treatment if they feel such treatment is medically necessary, have noted significant improvement in the condition of their patients; and,

    34. 4/2/2012 WHEREAS, There is substantial evidence that considerable scientific controversy surrounds the diagnosis and treatment of Lyme disease and other tick-borne illnesses; and,

    35. 4/2/2012 WHEREAS, Some physicians feel threatened by insurers and licensing boards for their choices among possible therapies for their patients; and,

    36. 4/2/2012 WHEREAS, The Commission and this General Assembly recommend that legislation be adopted that promotes access to medical care for persons with chronic Lyme disease in Rhode Island; and, Now, therefore, it is enacted by the General Assembly as follows:

    37. 4/2/2012 SECTION 5-373-3 § 5-37.5-3 Definitions. — For purposes of the chapter, (1) “Board” means the Rhode Island board of medical licensure and discipline;

    38. 4/2/2012 Definitions (2) “Lyme disease” means the clinical diagnosis by a physician of the presence in a patient of signs and symptoms compatible with acute infection with Borrelia burgdorferi, or with late stage or chronic infection with Borrelia burgdorferi, or with complications related to such an infection.

    39. 4/2/2012 Definition “Lyme disease” includes infection which meets the surveillance criteria set forth by the US Centers for Disease Control and Prevention (CDC), but also includes other acute and chronic manifestations of such an infection as determined by the physician;

    40. 4/2/2012 Definition (3) “Physician” means persons licensed pursuant to chapter 37 of this title by the board;

    41. 4/2/2012 Definition (4) “Therapeutic purpose” means the use of antibiotics to control a patient’s symptoms determined by the physician as reasonably related to Lyme disease and its sequelae;

    42. 4/2/2012 Definition (5) “Long term antibiotic therapy” means administration of oral, intramuscular or intravenous antibiotics, singly or in combination, for periods of greater than four (4) weeks.

    43. 4/2/2012 SECTION 5-37.5-4 § 5-37.5-4 Long-term antibiotic treatment. — (a) A physician may prescribe, administer, or dispense antibiotic therapy for therapeutic purpose to a person diagnosed with and having symptoms of Lyme disease if this diagnosis and treatment plan has been documented in the physician’s medical record for that patient.

    44. 4/2/2012 Long-term antibiotic treatment. — (a) (continued) No physician is subject to disciplinary action by the board solely for prescribing, administering or dispensing long-term antibiotic therapy for a therapeutic purpose for a patient clinically diagnosed with Lyme disease, if this diagnosis and treatment plan has been documented in the physician’s medical record for that patient.

    45. 4/2/2012 Long-term antibiotic treatment -(b) (b) Nothing in this section denies the right of the board to deny, revoke, or suspend the license of any physician or discipline any physician who prescribes, administers, or dispenses long-term antibiotic therapy for a non-therapeutic purpose,

    46. 4/2/2012 Long-term antibiotic treatment – (b) (continued) or who fails to monitor the ongoing care of a patient receiving long-term antibiotic therapy, or who fails to keep complete and accurate ongoing records of the diagnosis and treatment of a patient receiving long-term antibiotic therapy.

    47. 4/2/2012 SECTION 5-37.5-5 § 5-37.5-5 Mandatory coverage for certain Lyme disease treatments. [Effective until December 31, 2004.]

    48. 4/2/2012 Mandatory coverage -- (continued) — Every individual or group hospital or medical expense insurance policy or individual or group hospital or medical services plan contract delivered, issued for delivery, or renewed in this state on or after January 1, 2004, shall provide for Lyme disease treatment as provided in chapters 27-18, 27-19, 27-20, and 27-41 of the general laws.

    49. 4/2/2012 A copy of this law can be obtained by clicking on the following url. http://www.rilin.state.ri.us/statutes/title5/5-37.5/index.htm

    50. 4/2/2012 LYME DISEASE CASE REPORT FORM We believe that the current report form which doctors are required to submit to the health department does not meet the requirements of the current conditions.

    51. 4/2/2012 LYME DISEASE CASE REPORT FORM It is generally accepted that only 1 to 10 percent of Lyme cases are reported because they do not meet the CDC surveillance requirements.

    52. 4/2/2012 LYME DISEASE CASE REPORT FORM We therefore recommend that the current form be updated or modified so that adequate data is collected to maintain a tracking of Lyme disease cases in the state of Kansas

    53. 4/2/2012 END of PRESENTATION The Lyme Association of Greater Kansas City, Inc wishes to thank the Kansas State House Health Committee for this opportunity to share our concerns about the growing need to inform and support Lyme disease patients. Lymefight@aol.com

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