HB0480ham001 94TH GENERAL ASSEMBLY

Human Services Committee

Filed: 2/17/2005

09400HB0480ham001 LRB094 06314 LJB 41500 a

AMENDMENT TO HOUSE BILL 480

AMENDMENT NO. ______. Amend House Bill 480 by replacing the title with the following:

"AN ACT concerning public health, which may be referred to as Adamin and Ryan's Law."; and

by replacing everything after the enacting clause with the following:

"Section 1. Short title. This Act may be cited as the Newborn Eye Pathology Screening Act.

Section 5. Policy and legislative findings.

(a) It is the policy of the State of Illinois to make every effort to detect pediatric congenital ocular abnormalities that lead to premature death, blindness, or vision impairment unless treated soon after birth.

(b) The General Assembly finds and declares the following:

(1) Treatable congenital ocular diseases occur frequently and require increased early detection efforts.

(2) Early detection significantly enhances the ability to prevent serious damage from congenital abnormalities of the eye which, left undetected and untreated, may result in blinding or life-threatening diseases, or both. Examples of such disorders include retinoblastoma, congenital cataracts, and persistent hyperplastic primary vitreous. Other congenital anomalies, including colobomas, vascular retinal anomalies, and congenital retinal folds, can be treated by patching the good eye to prevent dense amblyopia if detected early.

(3) Retinoblastoma is a childhood cancer arising in immature retinal cells inside the eye and accounts for approximately 13% of all cancers in infants. Most children are diagnosed before 2 1/2 years of age. When retinoblastoma affects both eyes, the average age of diagnosis is 12 months.

(4) Increased emphasis on optimal examination methods, such as dilation of the eye with eye drops, may facilitate detection of the abnormal disease process inside the eye of the newborn. An abnormal screen will facilitate timely referral to an appropriately licensed health care provider acting within his or her scope of practice for diagnosis and to an ophthalmologist for treatment.

(5) Early detection and referral of an abnormal red reflex pupillary screen would allow early diagnosis of congenital cataract or retinoblastoma which, if recognized and treated as soon as possible after birth, could cause little long-term disability.

(6) Early diagnosis and intervention can reduce the number of visually impaired citizens and reduce the amount of public expenditures for health care, special education, and related services.

Section 10. Newborn Eye Pathology Screening Advisory Committee.

(a) By January 1, 2006, the Department of Human Services shall organize a Newborn Eye Pathology Screening Advisory Committee and appoint members of the Advisory Committee, including, but not limited to, the following:

(1) Two ophthalmologists with backgrounds in or knowledge of providing services to infants with retinoblastoma, one from the Chicago metropolitan area and one from the southern counties of Illinois.

(2) A pediatric ophthalmologist who sees general pediatric patients and is a designee of the American Association for Pediatric Ophthalmology and Strabismus.

(3) An academic pediatrician with a background in or knowledge of infant eye pathology screening.

(4) Two parents representing families with child blindness or other ocular abnormalities affecting vision, one from the Chicago metropolitan area and one from the southern counties of Illinois.

(5) A community pediatrician with a background in or experience with the routine instillation of dilating eye drops as part of the red reflex screening.

(6) A nurse with a background in or knowledge of the current Department's program for instillation of eye drops to prevent conjunctivitis.

(7) A retinal specialist with research experience in detecting the signs of treatable congenital eye disease.

(8) An optometrist with a background in or experience with pupil dilation in infants and red reflex screening for intraocular pathology.

(b) The Advisory Committee members shall serve without compensation, but shall be reimbursed for necessary travel expenses incurred in the performance of their duties.

(c) The duties of the Advisory Committee shall be to do all of the following:

(1) Develop and conduct training for hospitals implementing newborn hearing screening.

(2) Develop a referral system for early intervention services for those infants diagnosed with a congenital abnormality of the eye.

(3) Develop educational and informational materials for hospital personnel, health care professionals, and parents on appropriate follow-up procedures for infants diagnosed with a congenital abnormality of the eye.

(4) Monitor any reports made available to the State with respect to the eye pathology screening status of all newborns.

(5) Review administrative rules and make recommendations to the Department regarding the rules.

Section 20. Protocol; required screening.

(a) By January 1, 2006, the Department shall adopt the protocol developed by the American Academy of Pediatrics to optimally detect the presence of treatable causes of blindness in infants by 2 months of age.

(b) After January 1, 2006, all hospitals shall conduct eye screenings of all newborns prior to discharge.

(c) Any screening examination recommended pursuant to subsection (a) of this Section or required pursuant to subsection (b) of this Section shall not be conducted on a newborn if a parent or guardian of the newborn objects to the examination on the grounds that the examination conflicts with the religious beliefs or practices of the parent or guardian. A written statement of the objection shall be presented to the physician or other person whose duty it is to administer and report the screening under the provisions of this Act.

(d) Nothing in this Section shall be construed to supersede the clinical judgment of the licensed health care provider.

Section 25. Department of Public Health.

(a) Hospitals shall report information about each child with a positive eye screening result to the Illinois Department of Public Health.

(b) The Illinois Department of Public Health shall maintain a registry of cases of positive eye screening results, including information needed for the purpose of follow-up service.

Section 30. Rules. The Department of Human Services shall adopt rules necessary to implement this Act.

Section 99. Effective date. This Act takes effect July 1, 2005.".