States North Dakota
What Conditions are Screened For in North Dakota?
Amino Acid Disorders
Fatty Acid Oxidation Disorders
Organic Acid Conditions
About Newborn Screening in North Dakota
The purpose of the Newborn Screening Program is to test all newborns in North Dakota for early signs of a number of treatable conditions as required by North Dakota law. All of the tests are performed on one tiny sample of blood obtained by pricking the baby's heel a few days after birth. The blood is allowed to dry on absorbent paper, which is sent for testing to a laboratory in Iowa. The North Dakota Newborn Screening Program has designated the University of Iowa Hygienic Laboratory (UHL) as the central screening laboratory for the program. The Iowa Newborn Screening Program staff along with the North Dakota medical consultants assist attending North Dakota doctors in confirming a newborn’s diagnosis, recommending treatment and advising follow-up care.
This mandatory testing helps to ensure that your baby will be as healthy as possible. A simple blood test provides important information about your baby's health that you or your doctor might not otherwise know. Most infants with conditions screened by this program show no obvious signs of a medical problem immediately after birth. With each of these conditions there is an "invisible" problem in one of the many chemicals that are produced naturally in the baby's body. Using special laboratory tests, the Newborn Screening Program can identify the infant who may have one of the conditions and can then alert the doctor to the need for special care of the infant. Usually this can be done before the problem has time to cause lasting effects. With early diagnosis and medical treatment, complications from these serious conditions, such as intellectual disability or even death, usually can be prevented.
As with any testing, this testing will have one of two possible results: your baby will have either a normal or an abnormal screening result. While it is unlikely, if your doctor asks you to bring your baby in for retesting, do it so as soon as possible. A “retest” is not the same as saying your child tested positive for a condition, as many factors may have contributed to this abnormal result. However, if the second test indicates your child does have a condition, prompt action can be very important. If you don't have a telephone, it will be helpful to leave the phone number of a friend, relative or neighbor with the doctor when you leave the hospital with your newborn. You can also help by notifying your doctor immediately if you move soon after the baby is born. Feel free to ask your physician or care provider any questions that you have throughout the process.
How is Newborn Screening Paid for in North Dakota?
As stated by law the screening laboratory, which is selected by the department, may charge fees for necessary services. Currently the fee is $68.08. Facilities bill third party payers for this fee. There is no fee from the designated laboratory for repeat screens at this time; however, the facility where a repeat screen is drawn may charge a fee.
Policies and Resources
While it is highly discouraged, a parent may object to the testing of their newborn. This objection must be in writing and it will be placed into the newborn’s medical file.
Support for families:
One of the concerns some parents have after learning about their child’s condition is the cost of treatment. Fortunately, North Dakota provides various programs to help alleviate the financial burden on families and individuals living with these conditions. After diagnosis, the North Dakota Department of Health is available to refer individuals or families to public and private health care providers that can assist in long-term follow-up services.
One of the most expensive aspects of providing for a child or individual with a metabolic condition is the purchase of medically necessary foods that are specifically tailored to the needs of those living with the condition. Children's Special Health Services (CSHS) provides medical food and low-protein modified food products to individuals with Phenylketonuria (PKU) and Maple Syrup Urine Disease (MSUD). CSHS provides medical food at no cost to males under age 22 and females under age 45 who are diagnosed with PKU or MSUD, regardless of income. If an individual with PKU or MSUD is older than the limits for free medically necessary food, CSHS offers the products for purchase at cost, regardless of income. For more information, contact Children's Special Health Services - North Dakota Department of Health located at 600 East Boulevard Avenue, Dept. 301 Bismarck, ND 58505-0200 and reachable by phone at 701.328.2436 or 800.755.2714 (TTY: 800.366.6888) and fax at 701.328.1645. Their email address is firstname.lastname@example.org.
In addition to the government-sponsored programs, all private insurers in North Dakota are required to cover the cost of medical foods and low protein modified food products as part of their prescription drug coverage. The insurance company will cover up to $3,000 in medical food costs the same way they cover your prescriptions under your plan, meaning there may be a copay or similar small fee. However, if the individual is eligible to have their medical foods or low-protein modified food products covered by a state program, such as CSHS mentioned above, the private insurance company is not required to also cover the same services since they are available from the state.
Storage and Use of Dried Blood Spots:
Your child’s residual dried blood spots, or those left over on the collection card after the newborn testing is complete, will be stored by the state in a secure location as to protect the integrity of the samples and the privacy of the patients. After 18 years, the materials may be destroyed if the state so chooses, but the state is not required to do so.
Additionally, the Health Department may authorize the use of newborn screening tests to be used for research as long as the confidentiality of both the newborns and their families remains protected. For this to occur, the researcher must obtain written consent from each family to perform research on these tests. The research must be sponsored by a college or university, a government entity, a nonprofit medical association or a pharmaceutical industry. The researcher will be responsible for all fees incurred by the department in response to the request for research. Protected health information may not appear in any report or other document arising from the research project.