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| Public Act 098-0530
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| SB1640 Enrolled | LRB098 10386 RPM 40574 b |
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AN ACT concerning State government.
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Be it enacted by the People of the State of Illinois,
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represented in the General Assembly:
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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:
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(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 |
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symptoms can include visual disturbances, muscle weakness,
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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,
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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
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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 |
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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
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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
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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 |
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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 |
appointments. |
(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. |
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(e) The public members shall serve without compensation and |
shall not be reimbursed for necessary expenses incurred in the
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performance of their duties unless funds
become available to |
the Task Force. |
(f) The Task Force may meet and hold hearings as it deems |
appropriate. |
(g) The Department of Public Health shall provide staff
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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
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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.
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Section 99. Effective date. This Act takes effect upon |
becoming law.
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