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1 | AN ACT concerning State government.
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2 | Be it enacted by the People of the State of Illinois,
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3 | represented in the General Assembly:
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4 | Section 5. The Department of Public Health Powers and | ||||||
5 | Duties Law of the
Civil Administrative Code of Illinois is | ||||||
6 | amended 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,
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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,
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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
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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
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17 | in the Department of Public Health. The purpose of the Task | ||||||
18 | Force 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
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22 | productivity and independence and addressing emotional, | ||||||
23 | social, financial, and vocational
challenges of persons | ||||||
24 | with MS; and | ||||||
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. | ||||||
2 | (c) The Task Force shall consist of 16 members as follows: | ||||||
3 | (1) the Director of Public Health and the Director of | ||||||
4 | Human Services,
or their designees, who shall serve ex | ||||||
5 | officio; and | ||||||
6 | (2) fourteen public members, who shall be appointed by | ||||||
7 | the Director of Public Health as
follows: 2 neurologists | ||||||
8 | licensed to practice medicine in this State; 3 registered | ||||||
9 | nurses or other health professionals with MS certification | ||||||
10 | and extensive expertise with progressed MS; one
person upon | ||||||
11 | the recommendation of the National Multiple Sclerosis | ||||||
12 | Society; 3 persons who represent agencies that provide | ||||||
13 | services
or support to individuals with MS in this State; 3 | ||||||
14 | persons who have MS, at least one of whom having progressed | ||||||
15 | MS; and
2 members of the public with a demonstrated | ||||||
16 | expertise in issues relating to
the work of the Task Force. | ||||||
17 | Vacancies in the membership of the Task Force shall be | ||||||
18 | filled in the same
manner provided for in the original | ||||||
19 | appointments. | ||||||
20 | (d) The Task Force shall organize within 120 days following | ||||||
21 | the
appointment of a majority of its members and shall select a | ||||||
22 | chairperson and
vice-chairperson from among the members. The | ||||||
23 | chairperson shall appoint a
secretary who need not be a member | ||||||
24 | of the Task Force. | ||||||
25 | (e) The public members shall serve without compensation, | ||||||
26 | but shall be
reimbursed for necessary expenses incurred in the |
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1 | performance of their duties
and within the limits of funds | ||||||
2 | available to the Task Force. | ||||||
3 | (f) The Task Force shall be entitled to call to its | ||||||
4 | assistance and avail
itself of the services of the employees of | ||||||
5 | any State, county, or municipal
department, board, bureau, | ||||||
6 | commission, or agency as it may require and as may be
available | ||||||
7 | to it for its purposes. | ||||||
8 | (g) The Task Force may meet and hold hearings as it deems | ||||||
9 | appropriate. | ||||||
10 | (h) The Department of Public Health shall provide staff
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11 | support to the Task Force. | ||||||
12 | (i) The Task Force shall report its findings and | ||||||
13 | recommendations to the
Governor and to the General Assembly, | ||||||
14 | along with any legislative bills that it desires to recommend
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15 | for adoption by the General Assembly, no later than December | ||||||
16 | 31, 2015. | ||||||
17 | (j) The Task Force is abolished and this Section is | ||||||
18 | repealed on January 1, 2016.
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19 | Section 99. Effective date. This Act takes effect upon | ||||||
20 | becoming law.
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