96TH GENERAL ASSEMBLY
State of Illinois
2009 and 2010
HB0203

 

Introduced 1/14/2009, by Rep. Tom Cross - Barbara Flynn Currie

 

SYNOPSIS AS INTRODUCED:
 
20 ILCS 2310/2310-640 new

    Amends the Department of Public Health Powers and Duties Law of the Civil Administrative Code of Illinois. Requires the Department of Public Health to develop and implement a neonatal diabetes mellitus registry pilot program. Requires the Department to create an electronic registry to track glycosylated hemoglobin levels of persons. Requires physicians and other healthcare providers treating a patient with diabetes mellitus with onset before 12 months of age to report the occurrence of all such cases to the Department. Requires clinical laboratories performing glycosylated hemoglobin tests for patients with diabetes mellitus with onset before 12 months of age to report the results of each test that the laboratory performs to the Department. Provides that the Department shall allow access of the registry to neonatal diabetes mellitus research institutions. Provides that these provisions are repealed on December 31, 2012. Contains confidentiality provisions. Effective immediately.


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A BILL FOR

 

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1    AN ACT concerning State government, which may be referred
2to as Lilly's Law.
 
3    Be it enacted by the People of the State of Illinois,
4represented in the General Assembly:
 
5    Section 5. The Department of Public Health Powers and
6Duties Law of the Civil Administrative Code of Illinois is
7amended by adding Section 2310-640 as follows:
 
8    (20 ILCS 2310/2310-640 new)
9    Sec. 2310-640. Neonatal Diabetes Mellitus Registry Pilot
10Program.
11    (a) In this Section, "neonatal diabetes mellitus research
12institution" means an Illinois academic medical research
13institution that (i) conducts research in the area of diabetes
14mellitus with onset before 12 months of age and (ii) is
15functioning in this capacity as of the effective date of this
16amendatory Act of the 96th General Assembly.
17    (b) The Department, subject to appropriation or other funds
18made available for this purpose, shall develop and implement a
193-year pilot program to create and maintain a diabetes mellitus
20registry. The Department shall create an electronic registry to
21track the glycosylated hemoglobin level of each person who has
22a laboratory test to determine that level performed by a
23physician or healthcare provider or at a clinical laboratory in

 

 

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1this State.
2    The goals of the registry are as follows:
3        (1) to help identify new and existing patients with
4    neonatal diabetes;
5        (2) to provide a clearinghouse of information for
6    individuals, their families, and doctors about these
7    syndromes;
8        (3) to keep track of patients with these mutations who
9    are being treated with sulfonylurea drugs and their
10    treatment outcomes; and
11        (4) to help identify new genes responsible for
12    diabetes.
13    (c) Physicians and other healthcare providers treating a
14patient in this State with diabetes mellitus with onset before
1512 months of age shall report to the Department the following
16information from all such cases: the name of the physician, the
17name of the patient, the birthdate of the patient, the
18patient's age at the onset of diabetes, the patient's birth
19weight, the patient's blood sugar level at the onset of
20diabetes, any family history of diabetes of any type, and any
21other pertinent medical history of the patient. Clinical
22laboratories performing glycosylated hemoglobin tests in this
23State as of the effective date of this amendatory Act of the
2496th General Assembly for patients with diabetes mellitus with
25onset before 12 months of age must report the results of each
26test that the laboratory performs to the Department. The

 

 

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1physician, healthcare provider, or laboratory shall obtain the
2informed consent of the patient to the disclosure of the
3patient's information.
4    (d) The Department shall allow access of the registry to
5neonatal diabetes mellitus research institutions participating
6in the pilot program. The Department and the participating
7neonatal diabetes mellitus research institution shall do the
8following:
9        (1) compile results submitted under subsection (c) of
10    this Section in order to track:
11            (A) the prevalence and incidence of diabetes
12        mellitus among people tested in this State;
13            (B) the level of control the patients in each
14        demographic group exert over the diabetes mellitus;
15            (C) the trends of new diagnoses of diabetes
16        mellitus in this State; and
17            (D) the health care costs associated with diabetes
18        mellitus; and
19        (2) promote discussion and public information programs
20    regarding diabetes mellitus.
21    (e) Reports, records, and information obtained under this
22Section are confidential, privileged, not subject to
23disclosure, and not subject to subpoena and may not otherwise
24be released or made public except as provided by this Section.
25The reports, records, and information obtained under this
26Section are for the confidential use of the Department and the

 

 

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1participating neonatal diabetes mellitus research institutions
2and the persons or public or private entities that the
3Department determine are necessary to carry out the intent of
4this Section. Medical or epidemiological information may be
5released as follows:
6        (1) for statistical purposes in a manner that prevents
7    identification of individuals, health care facilities,
8    clinical laboratories, or health care practitioners;
9        (2) with the consent of each person identified in the
10    information; or
11        (3) to promote diabetes mellitus research, including
12    release of information to other diabetes registries and
13    appropriate State and federal agencies, under rules
14    adopted by the Department to ensure confidentiality as
15    required by State and federal laws.
16    (f) An employee of this State or a participating neonatal
17diabetes mellitus research institution may not testify in a
18civil, criminal, special, or other proceeding as to the
19existence or contents of records, reports, or information
20concerning an individual whose medical records have been used
21in submitting data required under this Section unless the
22individual consents in advance.
23    (g) Not later than December 1, 2012, the Department shall
24submit a report to the General Assembly regarding the pilot
25program that includes the following:
26        (1) an evaluation of the effectiveness of the pilot

 

 

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1    program; and
2        (2) a recommendation to continue, expand, or eliminate
3    the pilot program.
4    (h) The Department shall adopt rules to implement the pilot
5program, including rules to govern the format and method of
6collecting glycosylated hemoglobin data, in accordance with
7the Illinois Administrative Procedure Act.
8    (i) This Section is repealed on December 31, 2012.
 
9    Section 99. Effective date. This Act takes effect upon
10becoming law.