States Alaska

Program Overview:

Newborn screening is done to help prevent intellectual disability and other life threatening complications that may result from a condition a baby is born with. Many conditions can be effectively treated if they are detected early.

Alaska law requires that all babies born in Alaska receive screening tests for phenylketonuria (PKU) and other metabolic conditions that can result in intellectual disability and other serious health problems. Two specimens are collected at different times to perform this testing. The first blood specimen for testing is collected during the first 24-48 hours of life or before discharge from the hospital or birthing facility. The second specimen is collected when the baby is 10-14 days of age. If a child is born prematurely or has a low birth weight, three specimens will be collected. The first specimen will be collected upon admission to the neonatal intensive care unit, the second specimen will be collected at 48-72 hours of age, and the third specimen will be collected at 28 days of age if the newborn is still hospitalized or at the time of discharge per the neonatal intensive care unit’s screening guidelines.

Diagnostic confirmatory testing must be conducted on a newborn with a remaining abnormal screening test result after two screening specimens have been processed. A newborn with an abnormal result shall be referred to a physician for diagnostic confirmatory testing. For infants born “out of hospital,” the person responsible for registering the birth of the child also is responsible for assuring that the proper specimen is collected and submitted no later than the seventh day of life.

The newborn screening team consists of local health care providers, including Alaska hospitals, physicians, and midwives who collect blood samples after birth and the program manager and genetics clinic manager employed by Women, Children and Family Health (WCFH). Since there are no laboratories or metabolic specialists in Alaska who provide specialized services for newborn screening, these services are provided through an intergovernmental agreement with the Northwest Regional Newborn Screening Program at the Oregon Public Health Laboratory (OPHL) and the Oregon Health Sciences University (OHSU) in Portland, Oregon. Metabolic clinics in Anchorage and Fairbanks provide ongoing evaluation and treatment in management three times a year. Staff from OPHL and OHSU and the program manager monitor test results to ensure that screening is appropriately completed. Infants with abnormal test results are referred for additional testing.

Infants and children with positive test results are seen at Metabolic Clinics in Anchorage or Fairbanks for treatment management and genetic counseling.  Staffing for the Metabolic Clinic includes a metabolic specialist and a metabolic nutritionist. Medical consultation is provided to the local physician caring for the infant or child. Infants with positive test results that are not appropriate for the metabolic clinic will be referred to the appropriate specialists in the community. Treatment for metabolic diseases is life long. The Newborn Screening Advisory Committee, composed of local physicians, laboratory personnel, family members of affected children, midwives and nurse practitioners, provides recommendations for program planning and evaluation.

How is Newborn Screening Paid for in Alaska?

Alaska charges an $159.50 dollar fee for newborn screening. This covers two complete screens. There is no additional charge for any follow-up testing if done through OPHL. Medical consultation from OHSU is free. This fee does not include the sweat testing confirmation for Cystic Fibrosis.