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Human Services Committee
Filed: 2/17/2005
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| AMENDMENT TO HOUSE BILL 480
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| AMENDMENT NO. ______. Amend House Bill 480 by replacing the |
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| title with the following:
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| "AN ACT concerning public health, which may be referred to |
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| as Adamin and Ryan's Law."; and |
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| by replacing everything after the enacting clause with the |
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| following:
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| "Section 1. Short title. This Act may be cited as the |
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| Newborn Eye Pathology Screening Act. |
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| Section 5. Policy and legislative findings. |
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| (a) It is the policy of the State of Illinois to make every |
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| effort to detect pediatric congenital ocular abnormalities |
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| that lead to premature death, blindness, or vision impairment |
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| unless treated soon after birth.
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| (b) The General Assembly finds and declares the following:
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| (1) Treatable congenital ocular diseases occur |
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| frequently and require increased early detection efforts.
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| (2) Early detection significantly enhances the ability |
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| to prevent serious damage from congenital abnormalities of |
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| the eye which, left undetected and untreated, may result in |
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| blinding or life-threatening diseases, or both. Examples |
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| of such disorders include retinoblastoma, congenital |
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| cataracts, and persistent hyperplastic primary vitreous. |
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| Other congenital anomalies, including colobomas, vascular |
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| retinal anomalies, and congenital retinal folds, can be |
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| treated by patching the good eye to prevent dense amblyopia |
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| if detected early. |
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(3) Retinoblastoma is a childhood cancer arising in |
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| immature retinal cells inside the eye and accounts for |
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| approximately 13% of all cancers in infants. Most children |
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| are diagnosed before 2 1/2 years of age. When |
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| retinoblastoma affects both eyes, the average age of |
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| diagnosis is 12 months.
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| (4) Increased emphasis on optimal examination methods, |
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| such as dilation of the eye with eye drops, may facilitate |
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| detection of the abnormal disease process inside the eye of |
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| the newborn. An abnormal screen will facilitate timely |
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| referral to an appropriately licensed health care provider |
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| acting within his or her scope of practice for diagnosis |
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| and to an ophthalmologist for treatment.
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| (5) Early detection and referral of an abnormal red |
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| reflex pupillary screen would allow early diagnosis of |
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| congenital cataract or retinoblastoma which, if recognized |
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| and treated as soon as possible after birth, could cause |
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| little long-term disability.
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| (6) Early diagnosis and intervention can reduce the |
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| number of visually impaired citizens and reduce the amount |
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| of public expenditures for health care, special education, |
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| and related services.
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| Section 10. Newborn Eye Pathology Screening Advisory |
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| Committee. |
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| (a) By January 1, 2006, the Department of Human Services |
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| shall organize a Newborn Eye Pathology Screening Advisory |
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| Committee and appoint members of the Advisory Committee, |
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| including, but not limited to, the following:
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| (1) Two ophthalmologists with backgrounds in or |
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| knowledge of providing services to infants with |
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| retinoblastoma, one from the Chicago metropolitan area and |
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| one from the southern counties of Illinois. |
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| (2) A pediatric ophthalmologist who sees general |
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| pediatric patients and is a designee of the American |
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| Association for Pediatric Ophthalmology and Strabismus.
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| (3) An academic pediatrician with a background in or |
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| knowledge of infant eye pathology screening.
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| (4) Two parents representing families with child |
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| blindness or other ocular abnormalities affecting vision, |
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| one from the Chicago metropolitan area and one from the |
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| southern counties of Illinois.
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| (5) A community pediatrician with a background in or |
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| experience with the routine instillation of dilating eye |
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| drops as part of the red reflex screening.
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| (6) A nurse with a background in or knowledge of the |
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| current Department's program for instillation of eye drops |
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| to prevent conjunctivitis.
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| (7) A retinal specialist with research experience in |
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| detecting the signs of treatable congenital eye disease.
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| (8) An optometrist with a background in or experience |
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| with pupil dilation in infants and red reflex screening for |
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| intraocular pathology.
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| (b) The Advisory Committee members shall serve without |
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| compensation, but shall be reimbursed for necessary travel |
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| expenses incurred in the performance of their duties.
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| (c) The duties of the Advisory Committee shall be to do all |
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| of the following: |
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| (1) Develop and conduct training for hospitals |
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| implementing newborn hearing screening. |
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| (2) Develop a referral system for early intervention |
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| services for those infants diagnosed with a congenital |
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| abnormality of the eye. |
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| (3) Develop educational and informational materials |
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| for hospital personnel, health care professionals, and |
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| parents on appropriate follow-up procedures for infants |
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| diagnosed with a congenital abnormality of the eye. |
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| (4) Monitor any reports made available to the State |
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| with respect to the eye pathology screening status of all |
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| newborns. |
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| (5) Review administrative rules and make |
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| recommendations to the Department regarding the rules. |
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| Section 20. Protocol; required screening. |
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| (a) By January 1, 2006, the Department shall adopt the |
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| protocol developed by the American Academy of Pediatrics to |
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| optimally detect the presence of treatable causes of blindness |
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| in infants by 2 months of age. |
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| (b) After January 1, 2006, all hospitals shall conduct eye |
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| screenings of all newborns prior to discharge. |
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| (c) Any screening examination recommended pursuant to |
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| subsection (a) of this Section or required pursuant to |
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| subsection (b) of this Section shall not be conducted on a |
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| newborn if a parent or guardian of the newborn objects to the |
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| examination on the grounds that the examination conflicts with |
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| the religious beliefs or practices of the parent or guardian.
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| written statement of the objection shall be presented to the |
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| physician or other person whose duty it is to administer and |
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| report the screening under the provisions of this Act. |
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| (d) Nothing in this Section shall be construed to supersede |
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| the clinical judgment of the licensed health care provider.
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| Section 25. Department of Public Health. |
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| (a) Hospitals shall report information about each child |
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| with a positive eye screening result to the Illinois Department |
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| of Public Health. |
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| (b) The Illinois Department of Public Health shall maintain |
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| a registry of cases of positive eye screening results, |