SB1640 EnrolledLRB098 10386 RPM 40574 b

1    AN ACT concerning State government.
2    Be it enacted by the People of the State of Illinois,
3represented in the General Assembly:
4    Section 5. The Department of Public Health Powers and
5Duties Law of the Civil Administrative Code of Illinois is
6amended by adding Section 2310-665 as follows:
7    (20 ILCS 2310/2310-665 new)
8    Sec. 2310-665. Multiple Sclerosis Task Force.
9    (a) The General Assembly finds and declares the following:
10        (1) Multiple sclerosis (MS) is a chronic, often
11    disabling, disease that attacks the central nervous
12    system, which is comprised of the brain, spinal cord, and
13    optic nerves. MS is the number one disabling disease among
14    young adults, striking in the prime of life. It is a
15    disease in which the body, through its immune system,
16    launches a defensive and damaging attack against its own
17    tissues. MS damages the nerve-insulating myelin sheath
18    that surrounds and protects the brain. The damage to the
19    myelin sheath slows down or blocks messages between the
20    brain and the body.
21        (2) Most people experience their first symptoms of MS
22    between the ages of 20 and 40, but MS can appear in young
23    children and teens as well as much older adults. MS



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1    symptoms can include visual disturbances, muscle weakness,
2    trouble with coordination and balance, sensations such as
3    numbness, prickling or pins and needles, and thought and
4    memory problems. MS patients can also experience partial or
5    complete paralysis, speech impediments, tremors,
6    dizziness, stiffness and spasms, fatigue, paresthesias,
7    pain, and loss of sensation.
8        (3) The cause of MS remains unknown; however, having a
9    first-degree relative, such as a parent or sibling, with MS
10    significantly increases a person's risk of developing the
11    disease. According to the National Institute of
12    Neurological Disorders and Stroke, it is estimated that
13    there are approximately 250,000 to 350,000 persons in the
14    United States who are diagnosed with MS. This estimate
15    suggests that approximately 200 new cases are diagnosed
16    each week. Other sources report a population of at least
17    400,000 in the United States. The estimate of persons with
18    MS in Illinois is 20,000, with at least 2 areas of MS
19    clusters identified in Illinois.
20        (4) Presently, there is no cure for MS. The complex and
21    variable nature of the disease makes it very difficult to
22    diagnose, treat, and research. The cost to the family,
23    often with young children, can be overwhelming. Among
24    common diagnoses, non-stroke neurologic illnesses, such as
25    multiple sclerosis, were associated with the highest
26    out-of-pocket expenditures (a mean of $34,167), followed



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1    by diabetes ($26,971), injuries ($25,096), stroke
2    ($23,380), mental illnesses ($23,178), and heart disease
3    ($21,955). Median out-of-pocket costs for health care
4    among people with MS, excluding insurance premiums, were
5    almost twice as much as the general population. The costs
6    associated with MS increase with greater disability. Costs
7    for severely disabled individuals are more than twice those
8    for persons with a relatively mild form of the disease. A
9    recent study of medical bankruptcy found that 62.1% of all
10    personal bankruptcies in the United States were related to
11    medical costs.
12        (5) Therefore, it is in the public interest for the
13    State to establish a Multiple Sclerosis Task Force in order
14    to identify and address the unmet needs of persons with MS
15    and develop ways to enhance their quality of life.
16    (b) There is established the Multiple Sclerosis Task Force
17in the Department of Public Health. The purpose of the Task
18Force shall be to:
19        (1) develop strategies to identify and address the
20    unmet needs of persons with MS in order to enhance the
21    quality of life of persons with MS by maximizing
22    productivity and independence and addressing emotional,
23    social, financial, and vocational challenges of persons
24    with MS;
25        (2) develop strategies to provide persons with MS
26    greater access to various treatments and other therapeutic



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1    options that may be available; and
2        (3) develop strategies to improve multiple sclerosis
3    education and awareness.
4    (c) The Task Force shall consist of 16 members as follows:
5        (1) the Director of Public Health and the Director of
6    Human Services, or their designees, who shall serve ex
7    officio; and
8        (2) fourteen public members, who shall be appointed by
9    the Director of Public Health as follows: 2 neurologists
10    licensed to practice medicine in this State; 3 registered
11    nurses or other health professionals with MS certification
12    and extensive expertise with progressed MS; one person upon
13    the recommendation of the National Multiple Sclerosis
14    Society; 3 persons who represent agencies that provide
15    services or support to individuals with MS in this State; 3
16    persons who have MS, at least one of whom having progressed
17    MS; and 2 members of the public with a demonstrated
18    expertise in issues relating to the work of the Task Force.
19    Vacancies in the membership of the Task Force shall be
20filled in the same manner provided for in the original
22    (d) The Task Force shall organize within 120 days following
23the appointment of a majority of its members and shall select a
24chairperson and vice-chairperson from among the members. The
25chairperson shall appoint a secretary who need not be a member
26of the Task Force.



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1    (e) The public members shall serve without compensation and
2shall not be reimbursed for necessary expenses incurred in the
3performance of their duties unless funds become available to
4the Task Force.
5    (f) The Task Force may meet and hold hearings as it deems
7    (g) The Department of Public Health shall provide staff
8support to the Task Force.
9    (h) The Task Force shall report its findings and
10recommendations to the Governor and to the General Assembly,
11along with any legislative bills that it desires to recommend
12for adoption by the General Assembly, no later than December
1331, 2015.
14    (i) The Task Force is abolished and this Section is
15repealed on January 1, 2016.
16    Section 99. Effective date. This Act takes effect upon
17becoming law.