Researcher: ND Page 1 3/30/21 OLR Bill Analysis sSB 847 AN ACT CONCERNING NEWBORN INFANT HEALTH SCREENING. SUMMARY This bill makes various changes to the state’s Newborn Screening Program. Principally, it: 1. extends health care institutions’ newborn screening requirements to licensed nurse-midwives and midwives; 2. requires health care institutions, nurse-midwives, and midwives (hereafter “providers”) to generally perform newborn screenings for genetic and metabolic disorders using blood spot specimens between 24 and 48 hours after birth; 3. requires providers to send the blood spot specimens to the state public health lab within 24 hours after collection; 4. requires providers to notify the Department of Public Health (DPH) within 72 hours after a newborn’s birth about the reason why a specimen was not collected in this timeframe, when applicable; and 5. eliminates the requirement that the Office of Policy and Management approve a disorder included on the federal Recommended Uniform Screening Panel (RUSP) (see (BACKGROUND) before DPH adds it to the list of conditions for which the program screens. Separate from the Newborn Screening Program, existing law requires health care institutions to test newborns for other specified conditions. The bill eliminates the requirement that institutions test newborns for spinal muscular atrophy but continues to require that they test for critical congenital heart disease; cystic fibrosis; and, when 2021SB-00847-R000215-BA.DOCX Researcher: ND Page 2 3/30/21 a newborn fails a hearing test, cytomegalovirus. (The latter must be performed within available appropriations.) It also extends these testing requirements to licensed nurse-midwives and midwives, who must, as under existing law, administer the testing as soon as it is medically appropriate unless the parents object on religious grounds. Additionally, the bill requires health care institutions that perform the newborn screening test for cystic fibrosis to annually report to DPH the number and aggregate results of the screenings, regardless of the patient’s insurance status or payment source. Lastly, the bill makes several technical and conforming changes. EFFECTIVE DATE: October 1, 2021 NEWBORN SCREENING PR OGRAM Testing Timeframes The bill requires providers to perform required newborn screenings using a blood spot specimen. The specimen must be collected between 24 and 48 hours after the infant’s birth unless the provider determines a situation exists that warrants its early collection or that it is medically contraindicated. Under the bill, conditions that warrant early collection of the specimen include (1) imminent transfusion of blood products, (2) dialysis, (3) the infant’s early discharge from a health care institution or transfer from one institution to another, or (4) imminent death. Under the bill, if a newborn dies before a blood spot specimen is obtained, then the specimen must be collected as soon as practicable after death. Notification Requirements The bill requires providers to notify DPH when a specimen is not collected within the required 48 hours after birth for any reason, including (1) medical fragility, (2) the parent’s refusal of the screening due to religious conflict, or (3) a newborn receiving comfort measures only. 2021SB-00847-R000215-BA.DOCX Researcher: ND Page 3 3/30/21 Under the bill, providers must document the reason in the state’s newborn screening system or send written notification to DPH within 72 hours after the newborn’s birth. Specimen Processing The bill requires providers to send the blood spot specimen to the state’s public health laboratory within 24 hours after collecting it. DPH may request an additional blood spot specimen if the specimen (1) was collected early or after a blood transfusion, (2) is unsatisfactory for testing, or (3) yields an abnormal result as determined by the department. BACKGROUND Recommended Uniform Screening Panel RUSP is a list of health conditions that the federal Department of Health and Human Services recommends states screen for as part of their newborn screening programs. Conditions are included on the list based on evidence of the potential benefit of screening, states’ ability to screen, and the availability of effective treatments (42 U.S.C. § 300b-10). COMMITTEE ACTION Public Health Committee Joint Favorable Substitute Yea 32 Nay 1 (03/12/2021)