Full Text of SB1566 95th General Assembly
SB1566eng 95TH GENERAL ASSEMBLY
|
|
|
SB1566 Engrossed |
|
LRB095 10699 KBJ 30931 b |
|
| 1 |
| AN ACT concerning public health.
| 2 |
| Be it enacted by the People of the State of Illinois,
| 3 |
| represented in the General Assembly:
| 4 |
| Section 1. Short title. This Act may be cited as the | 5 |
| Genetic and Metabolic Diseases Advisory Committee Act. | 6 |
| Section 5. Genetic and Metabolic Diseases Advisory | 7 |
| Committee. | 8 |
| (a) The Director of Public Health shall create the Genetic | 9 |
| and Metabolic Diseases Advisory Committee to advise the | 10 |
| Department of Public Health regarding issues relevant to | 11 |
| newborn screenings of metabolic diseases. | 12 |
| (b) The purposes of the Genetic and Metabolic Diseases | 13 |
| Advisory Committee are all of the following: | 14 |
| (1) Advise the Department regarding issues relevant to | 15 |
| its Genetics Program. | 16 |
| (2) Advise the Department regarding optimal laboratory | 17 |
| methodologies for screening of the targeted conditions.
| 18 |
| (3) Recommend to the Department consultants who are | 19 |
| qualified to diagnose a condition detected by screening, | 20 |
| provide management of care, and genetic counseling for the | 21 |
| family.
| 22 |
| (4) Monitor the incidence of each condition for which | 23 |
| newborn screening is done, evaluate the effects of |
|
|
|
SB1566 Engrossed |
- 2 - |
LRB095 10699 KBJ 30931 b |
|
| 1 |
| treatment and genetic counseling, and provide advice on | 2 |
| disorders to be included in newborn screening panel.
| 3 |
| (5) Advise the Department on educational programs for | 4 |
| professionals and the general public.
| 5 |
| (6) Advise the Department on new developments and areas | 6 |
| of interest in relation to the Genetics Program. | 7 |
| (7) Any other matter deemed appropriate by the | 8 |
| Committee and the Director. | 9 |
| (c) The Committee shall consist of 20 members appointed by | 10 |
| the Director of Public Health and approved by the Governor. | 11 |
| Membership shall include physicians, geneticists, nurses, | 12 |
| nutritionists, and other allied health professionals, as well | 13 |
| as patients and parents. The term of membership shall be up to | 14 |
| 3 years. A member may be appointed for 2 consecutive terms. | 15 |
| After 2 terms, a member must be off the Committee for a least | 16 |
| one year. Members of the Committee must serve on a subcommittee | 17 |
| or a special project. Ex-officio members may be appointed and | 18 |
| may include the following:
| 19 |
| (1) The Chief of the Division of Children's Health and | 20 |
| Safety. | 21 |
| (2) The Director of the Division of Specialized Care | 22 |
| for Children. | 23 |
| (3) The Administrator of the Genetics Program. | 24 |
| (4) The Chief of the Metabolic Section of the Division | 25 |
| of Laboratories. | 26 |
| (5) The President of the Genetics Task Force of |
|
|
|
SB1566 Engrossed |
- 3 - |
LRB095 10699 KBJ 30931 b |
|
| 1 |
| Illinois, Inc. | 2 |
| (6) Representation from patient and parent support or | 3 |
| advocacy groups. | 4 |
| Ex-officio members shall not have voting privileges. | 5 |
| Section 10. The State Finance Act is amended by changing | 6 |
| Section 8h as follows: | 7 |
| (30 ILCS 105/8h)
| 8 |
| Sec. 8h. Transfers to General Revenue Fund. | 9 |
| (a) Except as otherwise provided in this Section and | 10 |
| Section 8n of this Act, and (c), (d), or (e),
notwithstanding | 11 |
| any other
State law to the contrary, the Governor
may, through | 12 |
| June 30, 2007, from time to time direct the State Treasurer and | 13 |
| Comptroller to transfer
a specified sum from any fund held by | 14 |
| the State Treasurer to the General
Revenue Fund in order to | 15 |
| help defray the State's operating costs for the
fiscal year. | 16 |
| The total transfer under this Section from any fund in any
| 17 |
| fiscal year shall not exceed the lesser of (i) 8% of the | 18 |
| revenues to be deposited
into the fund during that fiscal year | 19 |
| or (ii) an amount that leaves a remaining fund balance of 25% | 20 |
| of the July 1 fund balance of that fiscal year. In fiscal year | 21 |
| 2005 only, prior to calculating the July 1, 2004 final | 22 |
| balances, the Governor may calculate and direct the State | 23 |
| Treasurer with the Comptroller to transfer additional amounts | 24 |
| determined by applying the formula authorized in Public Act |
|
|
|
SB1566 Engrossed |
- 4 - |
LRB095 10699 KBJ 30931 b |
|
| 1 |
| 93-839 to the funds balances on July 1, 2003.
No transfer may | 2 |
| be made from a fund under this Section that would have the
| 3 |
| effect of reducing the available balance in the fund to an | 4 |
| amount less than
the amount remaining unexpended and unreserved | 5 |
| from the total appropriation
from that fund estimated to be | 6 |
| expended for that fiscal year. This Section does not apply to | 7 |
| any
funds that are restricted by federal law to a specific use, | 8 |
| to any funds in
the Motor Fuel Tax Fund, the Intercity | 9 |
| Passenger Rail Fund, the Hospital Provider Fund, the Medicaid | 10 |
| Provider Relief Fund, the Teacher Health Insurance Security | 11 |
| Fund, the Reviewing Court Alternative Dispute Resolution Fund, | 12 |
| the Voters' Guide Fund, the Foreign Language Interpreter Fund, | 13 |
| the Lawyers' Assistance Program Fund, the Supreme Court Federal | 14 |
| Projects Fund, the Supreme Court Special State Projects Fund, | 15 |
| the Supplemental Low-Income Energy Assistance Fund, the Good | 16 |
| Samaritan Energy Trust Fund, the Low-Level Radioactive Waste | 17 |
| Facility Development and Operation Fund, the Horse Racing | 18 |
| Equity Trust Fund, the Metabolic Screening and Treatment Fund,
| 19 |
| or the Hospital Basic Services Preservation Fund, or to any
| 20 |
| funds to which subsection (f) of Section 20-40 of the Nursing | 21 |
| and Advanced Practice Nursing Act applies. No transfers may be | 22 |
| made under this Section from the Pet Population Control Fund. | 23 |
| Notwithstanding any
other provision of this Section, for fiscal | 24 |
| year 2004,
the total transfer under this Section from the Road | 25 |
| Fund or the State
Construction Account Fund shall not exceed | 26 |
| the lesser of (i) 5% of the revenues to be deposited
into the |
|
|
|
SB1566 Engrossed |
- 5 - |
LRB095 10699 KBJ 30931 b |
|
| 1 |
| fund during that fiscal year or (ii) 25% of the beginning | 2 |
| balance in the fund.
For fiscal year 2005 through fiscal year | 3 |
| 2007, no amounts may be transferred under this Section from the | 4 |
| Road Fund, the State Construction Account Fund, the Criminal | 5 |
| Justice Information Systems Trust Fund, the Wireless Service | 6 |
| Emergency Fund, or the Mandatory Arbitration Fund.
| 7 |
| In determining the available balance in a fund, the | 8 |
| Governor
may include receipts, transfers into the fund, and | 9 |
| other
resources anticipated to be available in the fund in that | 10 |
| fiscal year.
| 11 |
| The State Treasurer and Comptroller shall transfer the | 12 |
| amounts designated
under this Section as soon as may be | 13 |
| practicable after receiving the direction
to transfer from the | 14 |
| Governor.
| 15 |
| (a-5) Transfers directed to be made under this Section on | 16 |
| or before February 28, 2006 that are still pending on May 19, | 17 |
| 2006 ( the effective date of Public Act 94-774)
this amendatory | 18 |
| Act of the 94th General Assembly shall be redirected as | 19 |
| provided in Section 8n of this Act.
| 20 |
| (b) This Section does not apply to: (i) the Ticket For The | 21 |
| Cure Fund; (ii) any fund established under the Community Senior | 22 |
| Services and Resources Act; or (iii) on or after January 1, | 23 |
| 2006 (the effective date of Public Act 94-511), the Child Labor | 24 |
| and Day and Temporary Labor Enforcement Fund. | 25 |
| (c) This Section does not apply to the Demutualization | 26 |
| Trust Fund established under the Uniform Disposition of |
|
|
|
SB1566 Engrossed |
- 6 - |
LRB095 10699 KBJ 30931 b |
|
| 1 |
| Unclaimed Property Act.
| 2 |
| (d) This Section does not apply to moneys set aside in the | 3 |
| Illinois State Podiatric Disciplinary Fund for podiatric | 4 |
| scholarships and residency programs under the Podiatric | 5 |
| Scholarship and Residency Act. | 6 |
| (e) Subsection (a) does not apply to, and no transfer may | 7 |
| be made under this Section from, the Pension Stabilization | 8 |
| Fund.
| 9 |
| (Source: P.A. 93-32, eff. 6-20-03; 93-659, eff. 2-3-04; 93-674, | 10 |
| eff. 6-10-04; 93-714, eff. 7-12-04; 93-801, eff. 7-22-04; | 11 |
| 93-839, eff. 7-30-04; 93-1054, eff. 11-18-04; 93-1067, eff. | 12 |
| 1-15-05; 94-91, eff. 7-1-05; 94-120, eff. 7-6-05; 94-511, eff. | 13 |
| 1-1-06; 94-535, eff. 8-10-05; 94-639, eff. 8-22-05; 94-645, | 14 |
| eff. 8-22-05; 94-648, eff. 1-1-06; 94-686, eff. 11-2-05; | 15 |
| 94-691, eff. 11-2-05; 94-726, eff. 1-20-06; 94-773, eff. | 16 |
| 5-18-06; 94-774, eff. 5-19-06; 94-804, eff. 5-26-06; 94-839, | 17 |
| eff. 6-6-06; revised 6-19-06.)
| 18 |
| Section 15. The Phenylketonuria Testing Act is amended by | 19 |
| changing Section 2 as follows:
| 20 |
| (410 ILCS 240/2) (from Ch. 111 1/2, par. 4904)
| 21 |
| Sec. 2. The Department of Public Health shall administer | 22 |
| the
provisions of this Act and shall:
| 23 |
| (a) Institute and carry on an intensive educational program | 24 |
| among
physicians, hospitals, public health nurses and the |
|
|
|
SB1566 Engrossed |
- 7 - |
LRB095 10699 KBJ 30931 b |
|
| 1 |
| public concerning
the diseases phenylketonuria, | 2 |
| hypothyroidism, galactosemia and other
metabolic diseases. | 3 |
| This
educational program shall include information about the | 4 |
| nature of the
diseases and examinations for the detection of | 5 |
| the diseases in early
infancy in order that measures may be | 6 |
| taken to prevent the mental
retardation resulting from the | 7 |
| diseases.
| 8 |
| (a-5) Beginning July 1, 2002, provide all newborns
with | 9 |
| expanded screening tests for the presence of genetic, | 10 |
| endocrine, or
other metabolic disorders, including | 11 |
| phenylketonuria, galactosemia,
hypothyroidism, congenital | 12 |
| adrenal hyperplasia, biotinidase deficiency,
and sickling | 13 |
| disorders, as well as other amino acid disorders, organic
acid | 14 |
| disorders, fatty acid oxidation disorders, and other | 15 |
| abnormalities
detectable through the use of a tandem mass | 16 |
| spectrometer. Beginning 6 months following the registration of | 17 |
| the necessary reagents with the federal Food and Drug | 18 |
| Administration and the Centers for Disease Control and | 19 |
| Prevention has available quality assurance testing methodology | 20 |
| for these processes, provide all newborns with expanded | 21 |
| screening tests for the presence of Lysosomal Storage Disorders | 22 |
| known as Krabbe, Pompe, Gaucher, Fabry, and Niemann-Pick. If by | 23 |
| July 1,
2002, the Department is unable to provide expanded | 24 |
| screening using the
State Laboratory, it shall temporarily | 25 |
| provide such screening
through an accredited laboratory | 26 |
| selected by the Department until the
Department has the |
|
|
|
SB1566 Engrossed |
- 8 - |
LRB095 10699 KBJ 30931 b |
|
| 1 |
| capacity to provide screening through the State
Laboratory. If | 2 |
| expanded screening is provided on a temporary basis
through an | 3 |
| accredited laboratory, the Department shall substitute the fee
| 4 |
| charged by the accredited laboratory, plus a 5% surcharge for
| 5 |
| documentation and handling, for the fee authorized in | 6 |
| subsection (e) of
this Section.
| 7 |
| (b) Maintain a registry of cases including information of | 8 |
| importance
for the purpose of follow-up services to prevent | 9 |
| mental retardation.
| 10 |
| (c) Supply the necessary treatment product where | 11 |
| practicable for
diagnosed cases for as long as medically | 12 |
| indicated, when the product is
not available through other | 13 |
| State agencies.
| 14 |
| (d) Arrange for or provide public health nursing, nutrition | 15 |
| and
social services and clinical consultation as indicated.
| 16 |
| (e) Require that all specimens collected pursuant to this | 17 |
| Act or the rules
and regulations promulgated hereunder be | 18 |
| submitted for testing to the nearest
Department of Public | 19 |
| Health laboratory designated to perform such tests.
The | 20 |
| Department may develop a reasonable fee structure and may levy | 21 |
| fees
according to such structure to cover the cost of providing | 22 |
| this testing
service. Fees collected from the provision of this | 23 |
| testing service shall
be placed in a special fund in the State | 24 |
| Treasury, hereafter known as the
Metabolic Screening and | 25 |
| Treatment Fund. Other State and federal funds for
expenses | 26 |
| related to metabolic screening, follow-up and treatment |
|
|
|
SB1566 Engrossed |
- 9 - |
LRB095 10699 KBJ 30931 b |
|
| 1 |
| programs
may also be placed in such Fund. Moneys shall be | 2 |
| appropriated from such
Fund to the Department of Public Health | 3 |
| solely for the purposes of providing
metabolic screening, | 4 |
| follow-up and treatment programs. Nothing in this
Act shall be | 5 |
| construed to prohibit any licensed medical facility from
| 6 |
| collecting
additional specimens for testing for metabolic or | 7 |
| neonatal diseases or any
other diseases or conditions, as it | 8 |
| deems fit. Any person
violating the provisions of this | 9 |
| subsection (e) is guilty of a petty offense.
| 10 |
| (Source: P.A. 92-701, eff. 7-19-02.)
| 11 |
| Section 99. Effective date. This Act takes effect upon | 12 |
| becoming law.
|
|