States Alaska

Alaska currently screens for 53 conditions. Each state runs its program differently, for more detailed information please visit their website at http://dhss.alaska.gov/dph/wcfh/Pages/metabolic/default.aspx.

Download Brochure

The state of Alaska does not have a brochure available. You can find more state specific information at their website.

What Conditions are Screened For in Alaska?

About Newborn Screening in 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 and Genetics 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 $80 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.

Policies and Resources

Opt-Out:

Parents have the right to refuse the screening tests for their newborn infant if this testing conflicts with their religious practices or beliefs. If this is true for you, be sure to tell the hospital staff and your doctor as soon as possible. If you opt-out, your doctor will have you sign an "informed dissent" form.

Support for families:

One of the concerns families experience when they find out their child has a condition detected during newborn screening is increased cost of health care. Fortunately, Alaska has a law in place to help families who have a child with Phenylketonuria (PKU). Private insurers in Alaska are not allowed to deny coverage for you or your child’s PKU. They are required to cover treatment, including special medically necessary formulas, the same way they cover other medical treatments.  This may mean the family will still be responsible for a co-pay or deductible.

Storage and Use of Dried Blood Spots:

After a newborn’s blood has been tested for all of the conditions, there will be some blood remaining on the specimen cards. This blood is called a “residual dried blood spot”.

The State of Alaska Records Retention Schedule states that residual dried blood spots are to be retained for one year at the OPHL and then are shipped to the Alaska Public Health Lab for an additional two years of storage.

Alaska’s Newborn Metabolic Screening Advisory Committee has developed a policy on use of the residual dried blood spots while they are in storage. They will be utilized for test verification analysis as deemed appropriate by the Advisory Committee and will be made available to the newborn’s family if they are seeking further genetic testing and as recommended by their primary care provider (for DNA analysis only).

The residual dried blood spots will never be used for routine paternity testing unless medically indicated. They are also not available for analysis of conditions tested previously by OPHL in the newborn screening process because there may be significant degradation of the sample that would affect the methodologies and results. Lastly, they will never be released for the purpose of a research study.

To see a copy of the blood spot card used in Alaska click here.

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