Public Act 098-0530
SB1640 EnrolledLRB098 10386 RPM 40574 b

    AN ACT concerning State government.
    Be it enacted by the People of the State of Illinois,
represented in the General Assembly:
    Section 5. The Department of Public Health Powers and
Duties Law of the Civil Administrative Code of Illinois is
amended by adding Section 2310-665 as follows:
    (20 ILCS 2310/2310-665 new)
    Sec. 2310-665. Multiple Sclerosis Task Force.
    (a) The General Assembly finds and declares the following:
        (1) Multiple sclerosis (MS) is a chronic, often
    disabling, disease that attacks the central nervous
    system, which is comprised of the brain, spinal cord, and
    optic nerves. MS is the number one disabling disease among
    young adults, striking in the prime of life. It is a
    disease in which the body, through its immune system,
    launches a defensive and damaging attack against its own
    tissues. MS damages the nerve-insulating myelin sheath
    that surrounds and protects the brain. The damage to the
    myelin sheath slows down or blocks messages between the
    brain and the body.
        (2) Most people experience their first symptoms of MS
    between the ages of 20 and 40, but MS can appear in young
    children and teens as well as much older adults. MS
    symptoms can include visual disturbances, muscle weakness,
    trouble with coordination and balance, sensations such as
    numbness, prickling or pins and needles, and thought and
    memory problems. MS patients can also experience partial or
    complete paralysis, speech impediments, tremors,
    dizziness, stiffness and spasms, fatigue, paresthesias,
    pain, and loss of sensation.
        (3) The cause of MS remains unknown; however, having a
    first-degree relative, such as a parent or sibling, with MS
    significantly increases a person's risk of developing the
    disease. According to the National Institute of
    Neurological Disorders and Stroke, it is estimated that
    there are approximately 250,000 to 350,000 persons in the
    United States who are diagnosed with MS. This estimate
    suggests that approximately 200 new cases are diagnosed
    each week. Other sources report a population of at least
    400,000 in the United States. The estimate of persons with
    MS in Illinois is 20,000, with at least 2 areas of MS
    clusters identified in Illinois.
        (4) Presently, there is no cure for MS. The complex and
    variable nature of the disease makes it very difficult to
    diagnose, treat, and research. The cost to the family,
    often with young children, can be overwhelming. Among
    common diagnoses, non-stroke neurologic illnesses, such as
    multiple sclerosis, were associated with the highest
    out-of-pocket expenditures (a mean of $34,167), followed
    by diabetes ($26,971), injuries ($25,096), stroke
    ($23,380), mental illnesses ($23,178), and heart disease
    ($21,955). Median out-of-pocket costs for health care
    among people with MS, excluding insurance premiums, were
    almost twice as much as the general population. The costs
    associated with MS increase with greater disability. Costs
    for severely disabled individuals are more than twice those
    for persons with a relatively mild form of the disease. A
    recent study of medical bankruptcy found that 62.1% of all
    personal bankruptcies in the United States were related to
    medical costs.
        (5) Therefore, it is in the public interest for the
    State to establish a Multiple Sclerosis Task Force in order
    to identify and address the unmet needs of persons with MS
    and develop ways to enhance their quality of life.
    (b) There is established the Multiple Sclerosis Task Force
in the Department of Public Health. The purpose of the Task
Force shall be to:
        (1) develop strategies to identify and address the
    unmet needs of persons with MS in order to enhance the
    quality of life of persons with MS by maximizing
    productivity and independence and addressing emotional,
    social, financial, and vocational challenges of persons
    with MS;
        (2) develop strategies to provide persons with MS
    greater access to various treatments and other therapeutic
    options that may be available; and
        (3) develop strategies to improve multiple sclerosis
    education and awareness.
    (c) The Task Force shall consist of 16 members as follows:
        (1) the Director of Public Health and the Director of
    Human Services, or their designees, who shall serve ex
    officio; and
        (2) fourteen public members, who shall be appointed by
    the Director of Public Health as follows: 2 neurologists
    licensed to practice medicine in this State; 3 registered
    nurses or other health professionals with MS certification
    and extensive expertise with progressed MS; one person upon
    the recommendation of the National Multiple Sclerosis
    Society; 3 persons who represent agencies that provide
    services or support to individuals with MS in this State; 3
    persons who have MS, at least one of whom having progressed
    MS; and 2 members of the public with a demonstrated
    expertise in issues relating to the work of the Task Force.
    Vacancies in the membership of the Task Force shall be
filled in the same manner provided for in the original
    (d) The Task Force shall organize within 120 days following
the appointment of a majority of its members and shall select a
chairperson and vice-chairperson from among the members. The
chairperson shall appoint a secretary who need not be a member
of the Task Force.
    (e) The public members shall serve without compensation and
shall not be reimbursed for necessary expenses incurred in the
performance of their duties unless funds become available to
the Task Force.
    (f) The Task Force may meet and hold hearings as it deems
    (g) The Department of Public Health shall provide staff
support to the Task Force.
    (h) The Task Force shall report its findings and
recommendations to the Governor and to the General Assembly,
along with any legislative bills that it desires to recommend
for adoption by the General Assembly, no later than December
31, 2015.
    (i) The Task Force is abolished and this Section is
repealed on January 1, 2016.
    Section 99. Effective date. This Act takes effect upon
becoming law.