The Lyme Association of Greater Kansas City, Inc.

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The Lyme Association of Greater Kansas City, Inc.

• Ed Olson, President
• Evelyn Steeley, 1st Vice President
• Karen Welch, 2nd Vice President
• Kathy White, Secretary
• Ray Schmitz, Treasurer
• Welcome to our Presentation

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Lyme Association of Greater Kansas City, Inc.

• A non-profit, 501 (c) (3) all-volunteer,
  patient support group serving both Kansas and
  Missouri

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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

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Activities of the Lyme Association

• Maintains a website 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_at_aol.com

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Activities (continued)

• Publishes a monthly newsletter, Prime Time Lyme
• Produces a brochure about Lyme disease
• Distributes brochures to libraries and
  physicians and chiropractic offices

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Lyme Association Display Table
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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

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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 ABCs 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
  
  
  
  
  
  

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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

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The Handbook,
Tick Card and Brochure
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Education Makes a Difference

• Tick bites, the usual cause of Lyme disease, can
  often be prevented if people know what measures
  to take

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Education Makes a Difference

• Prompt treatment can often prevent the disease
  from becoming chronic and disabling

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Education Makes a Difference

• Knowledge of early symptoms and the importance
  of prompt treatment will motivate people to seek
  prompt medical care

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Education Makes a Difference

• Funding is needed by the Lyme Association to
  reach their goal of an Education packet in every
  school in Kansas

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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.

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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

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The Lyme Association of Greater Kansas City, Inc.

• PART TWO
• Ed Olson, President

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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)

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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

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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

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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)

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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.

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Rhode Island Lyme Disease Law CHAPTER 5-37.5

• 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.

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Rhode Island Lyme Disease Law TITLE 5

• Businesses and Professions
• CHAPTER 5-37.5
• Lyme Disease Diagnosis and Treatment
• SECTION 5-37.5-1

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5-37.5-1 Short title.

• This chapter shall be known and may be cited
  as the Lyme Disease Diagnosis and Treatment Act.

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• TITLE 5
• Businesses and Professions
• CHAPTER 5-3 7.5
• SECTION 5-37.5-2

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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,

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WHEREAS,

• The General Assembly recognizes the negative
  impact of Lyme disease on Rhode Islanders and,

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WHEREAS,

• Rhode Island has the second highest number of
  reported Lyme disease cases as a percentage of
  population in the United States and,

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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,

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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,

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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,

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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,

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WHEREAS,

• There is substantial evidence that considerable
  scientific controversy surrounds the diagnosis
  and treatment of Lyme disease and other
  tick-borne illnesses and,

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WHEREAS,

• Some physicians feel threatened by insurers and
  licensing boards for their choices among possible
  therapies for their patients and,

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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

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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

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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.

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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

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Definition

• (3) Physician means persons licensed pursuant
  to chapter 37 of this title by the board

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Definition

• (4) Therapeutic purpose means the use of
  antibiotics to control a patients symptoms
  determined by the physician as reasonably related
  to Lyme disease and its sequelae

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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.

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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
  physicians medical record for that patient.

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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
  physicians medical record for that patient.

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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,

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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.

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SECTION 5-37.5-5

• 5-37.5-5 Mandatory coverage for certain Lyme
  disease treatments. Effective until December 31,
  2004.

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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.

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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
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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.

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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.

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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

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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_at_aol.com