Oregon currently screens for 45 conditions. Each state runs its program differently, for more detailed information please visit their website at https://public.health.oregon.gov/LaboratoryServices/NewbornScreening/Pages/index.aspx.
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For Health Professionals
What Conditions are Screened For in Oregon?
Amino Acid Disorders
- State preferred name: phenylketonuria
Fatty Acid Oxidation Disorders
Organic Acid Conditions
About Newborn Screening in Oregon
As a new parent, you will receive a lot of information covering many topics. It is important that you pay attention to the newborn screening information provided about Oregon’s testing program. Newborn screening is a special blood test that can find rare conditions that can cause brain damage or death if they are not treated early. A few drops of blood from your baby’s heel are put onto a special filter paper and tested to determine the presence of one of the conditions screened for by the laboratory. State law requires hospitals, birthing centers, and midwives to collect two screening specimens on every baby born in the state. The first screen should be collected when your baby is 24 to 48 hours old or before the baby leaves the birthing center. The second screen should be collected between 10 and 15 days of age. The second half of the screening card should be taken to your baby’s care provider to be used to collect the second screen.
This newborn screening test is vital because by the time your child exhibits clinical symptoms, the damage may be permanent or the infant may die, sometimes without a diagnosis having been made. The purpose of newborn screening is to identify infants at risk that require more definitive testing. As with any laboratory test, both false negative and false positive results are possible. Screening test results are insufficient information on which to base diagnosis or treatment. Diligence in making sure your child is tested twice, once at the hospital and once at your child’s first doctor appointment, significantly increases the chances that the condition will be detected and life-saving treatment can begin immediately. It is important that your doctor knows where to contact you if follow-up is needed, so make sure all phone numbers and addresses are updated and you follow up on the instructions as soon as possible.
How is Newborn Screening Paid for in Oregon?
The cost of the two-specimen newborn screening kit is $64. Most insurers, both public and private, will cover this cost as part of your newborn’s entire hospital bill. No Oregon infant will be denied testing if a parent cannot afford it. A parent or health care provider may request a fee exemption by sending in a “Statement of Fee Exemption” to the Oregon Health Authority (OHA) either on the specimen identification form or on a listing of exempt infants. Both must be given to the OHA within a year and after they receive it, they will issue a refund check. According to Oregon Administrative Rule OR ADC 333-024-0240, the statement must include the following:
STATEMENT OF FEE EXEMPTION:
The undersigned states that the parents of ________________ are unable to pay the fee for testing for METABOLIC DISEASES because of lack of sufficient funds.
Policies and Resources
While it is highly discouraged, a parent may object to the newborn screening if the child will be raised within a religion that is opposed to the testing. If this is the case, the parent will be required to state the religious objection in writing.
Support for families:
One of the most common questions a family will face when told their child has a genetic condition is wondering how they will afford specialized care for their newborn throughout life. Fortunately, Oregon provides both short-term and long-term follow-up services for its residents with conditions detected during newborn screening.
The Child Development and Rehabilitation Center, with offices in both Eugene and Portland, provides interdisciplinary clinical services for persons with developmental disabilities and other special health care needs. They also offer outreach clinical services covering a variety of special health needs in Grants Pass, Klamath Falls, Medford and Roseburg and community programs in most Oregon counties. Visit the Child Development and Rehabilitation Center website for more information about specific programs or locations. Their Portland clinic can be reached at (800) 452-3563 or (503) 494-8095 and the Eugene clinic can be reached at (800) 637-0700 or (541) 346-3575.
Specifically, children with conditions detected through newborn screening in Oregon may be most interested in the Metabolic Program, located at the Child Development and Rehabilitation Center (CDRC) in Portland. The Metabolic Program at CDRC is the only one of its kind in the state. It is one of a network of national and international centers that share information and experience. The program provides state-of-the-art diagnostic and management services for children with confirmed or suspected metabolic inborn errors. Efforts range from case finding through diagnosis, evaluation, management, genetic counseling and treatment. The program welcomes referrals at any age. Also, referrals are welcome from any source including parents, educators, caseworkers, physicians, and other health/allied health care providers. Many families require a referral from their primary care provider in order for their insurance to cover the service; if this is the case, their bilingual administrative staff can help you with the process. For more information, or to initiate a referral, please call 503-494-8095 or 800-452-3563 or visit the CDRC website.
Additionally, Oregon law requires all individual or group health insurance policies which provide coverage for hospital or medical expenses to cover the expenses which result from the diagnosis, monitoring and controlling of conditions detected during newborn screening. The insurance policy must cover events such as clinical visits, analysis, and medical foods. For example, health insurers in the state are required to provide coverage for formula that is medically necessary for children who have a metabolic condition and require it for an essential source of nutrition. The insurance policy may require a deductible or coinsurance in regards to the covered services.
Storage and Use of Dried Blood Spots:
Newborn screening specimens are stored by the Oregon State Public Health Laboratory for one year and then destroyed. Research requests for use of stored dried bloodspot specimens outside of the newborn screening program are subject to approval by the Oregon State Public Health Laboratory through the “OSPHL Use of Human Samples” process, appropriate Institutional Review Board approval, and Oregon Genetic Privacy Statutes. Families may request destruction of their baby’s specimen prior to the end of the one year storage period by a written request to the Oregon State Public Health Laboratory. Requests for the return of a specimen to the baby’s family must be done in writing through the baby’s medical practitioner.