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 some babies are born with. Most babies do not have these conditions. But if a baby does, the condition can cause brain damage or death if they are not treated early. None of the conditions can be cured. However, finding the conditions early helps your child’s doctor provide treatment guidance to reduce the effects of the conditions.
A medical staff member will collect a few drops of blood from your baby’s heel and put it onto a special filter paper. The lab in Oregon tests the blood to determine if your baby has one of these conditions, or not. To see a copy of the blood spot card used in Oregon click here.
By state law a hospital, birthing center, or midwife must collect two sets of blood for every baby born in the state. The first set should be collected when your baby is 1 to 2 days old, or before the baby leaves the birthing center. The second set should be collected between 10 and 15 days of age. The birthing center will give you the filter paper for the second set. Take this to your baby’s doctor at their first visit after birth.
This test is important because it helps find conditions while treating the baby is most helpful. Making sure your child is tested twice, once at the hospital and once at your child’s first doctor appointment increases the chances that the condition will be found early enough for treatment to help.
Make sure the phone numbers and addresses you give your baby’s doctor are correct so that your baby’s doctor can contact you if follow-up is needed.
How is Newborn Screening Paid for in Oregon?
The cost kit to test your newborn costs $64. Most medical insurance will cover this cost as part of the hospital bill.
No Oregon infant will be denied testing if a parent cannot afford it. If medical insurance does not cover the cost, a parent or health care provider may request a refund by sending in a “Statement of Fee Exemption” to the lab. The request must be given to the OHA within one year of the baby’s birth and the lab 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
All babies born in the state of Oregon must be tested. If a parent objects to the testing based on religious beliefs, they may choose to not have the baby tested. The religious objection must be stated in writing.
Support for families:
After learning that a baby has a genetic condition, families sometimes have questions about the possibility of increased medical costs. Fortunately, Oregon provides both short-term and long-term follow-up services for its residents with conditions found during newborn screening.
Oregon law requires all individual or group health insurance policies that provide coverage for hospital or medical expenses to cover the cost of care for conditions detected during newborn screening. The policy must cover doctor visits, testing, and medical foods. The insurance policy may require a deductible or coinsurance for the covered services.
A helpful resource for children and families is 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 and helps with finding and treating the conditions found with newborn screening. The program welcomes referrals at any age. Referrals are also welcome from any source including parents, educators, caseworkers, physicians, and other health/allied health care providers. Many families require a referral from their doctor 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.
The Child Development and Rehabilitation Center, has offices in both Eugene and Portland, provides interdisciplinary clinical services for persons with developmental disabilities and other special health care needs. They also offer services for special health needs in Grants Pass, Klamath Falls, Medford, and Roseburg. They also have 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.
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 that the lab destroy their baby’s specimen before the one year storage period by making a request in writing to the Oregon State Public Health Laboratory. Requests to return a specimen to the baby’s family must be done in writing through the baby’s medical practitioner.