What Conditions are Screened For in Nebraska?
Amino Acid Disorders
Fatty Acid Oxidation Disorders
Organic Acid Conditions
About Newborn Screening in Nebraska
Newborn screening is done for every baby born in Nebraska. A small amount of blood is collected from your newborn between 24-48 hours after birth in order to test it for conditions that could be harmful to your child if left untreated. If a baby has one of these conditions and it is not found early, the baby could suffer seizures, physical disabilities, intellectual disability, chronic illness, or may even die. Newborn screening is so important because most of these conditions do not have obvious symptoms and, if they are detected soon after birth, they have very successful treatment regimens that will drastically improve your newborn’s quality of life. In Nebraska, the blood spots will be sent to a private lab and the follow-up, if necessary, will come from your newborn's physician.
How is Newborn Screening Paid for in Nebraska?
The private laboratory charges the hospital $45.50. Most insurers, including Medicaid, cover the cost of newborn screening testing as part of the obstetric diagnostic related group charge. Hospital fees for collection and handling of the specimen vary, and are not regulated by the State Newborn Screening Program.
Policies and Resources
The law in Nebraska does not allow parents to sign a "waiver" or "dissent" from the required newborn screening panel. Opting out is not allowed for any reason, religious or otherwise. A physician or a government attorney has the legal authority to bring a civil action in court to enforce the newborn screening requirement. County and Juvenile courts in Nebraska have heard five cases and in all five the judge ruled the child must be screened. An appeal to the Nebraska Supreme Court was heard in 2005 and the Court unanimously upheld the requirement that all newborns must be screened. Likewise, a federal District Court ruling in 2006 upheld the state law.
Support for families:
Cost is often an initial concern for families who find out their child has a condition. Nebraska law requires the state to provide formula for those individuals who require specialized diets due to certain conditions detected by newborn screening. To help defray costs to families who have children with the listed conditions, no fees may be charged for specialized infant formula and up to $2,000 of pharmaceutically manufactured food supplements will be available to the family each year. There are also programs available through Medicaid and Medicaid Waivers. For medical formula, the program pays for unrecovered costs after insurance has been properly billed.
In addition to nutritional assistance, the Medically Handicapped Children’s Program and Early Intervention Services Coordination can help inform families of the other services available to them. Physicians and others can put families in touch with Early Development Network, also known as “Childfind”, which will helps families navigate the available state services. They can be contacted at 1-888-806-6287 or http://www.childfind.ne.gov/content/resources.html.
In addition to state financial support, Nebraska families also have access to specialty clinics, which have specialists such as Pediatric Endocrinologists, Pediatric Hematologists, Pediatric Immunologists, Pediatric Medical Geneticists board certified in Metabolism, Pediatric Pulmonologists, and allied health professionals such as advanced practice nurses and dietitians with expertise in metabolic conditions. Nurses specializing in endocrine, hematologic conditions and cystic fibrosis care also staff these clinics. Genetic counseling services are also available to families who are interested.
Storage and Use of Dried Blood Spots:
When newborn screening is performed, 5 blood spots are collected on filter paper. Multiple “punches” of varying sizes are taken from the blood spots so they can be tested for many conditions. Some people have questions about what happens to the leftover dried blood spots after the newborn screening tests are completed. For babies born in Nebraska, after the testing is completed, the residual dried blood spots are required to be kept for 90 days at the contracted laboratory. This is primarily for quality assurance purposes and it helps make sure the tests are accurate. It is also available for the newborn or their care provider if they need access to it for any clinical reason.
After this 90 day period, the specimen can be used for public health research if the legally responsible parent or guardian provides written consent. Parental consent will be necessary if the residual dried blood spots will be used either anonymously or with the newborn’s identifying information attached. If the parent provides consent for the public health research, the researcher must go through many steps set out in the law that help ensure the newborn’s information will be kept secure. If a newborn’s residual dried blood spot is not requested for research, it will be destroyed within 30 days of the expiration of the 90 day storage period. A record of specimens destroyed is provided to the Nebraska Newborn Screening Program as evidence of compliance with this requirement.
In addition to the potential use for research, residual dried blood spots may also be used for other public health purposes after the 90 day storage period expires. For example, the residual dried blood spots deemed unable to be tested may be released to hospitals for examples of unsatisfactory specimens so hospitals can improve their procedures. If they are, the dried blood spots will be detached from the written patient identification. Use of the residual dried blood spots for additional public health purposes is also possible when the Chief Medical Officer has determined there is a valid public health purpose for the residual dried blood spots where the patient’s information will be protected and the Newborn Screening Advisory Committee is informed beforehand.
Similar types of public health research and quality control are also done in many other states outside of Nebraska because they serve very valuable public health purposes, as researchers can further study newborn conditions and diseases as well as treatment, both of which will benefit all. Research requests appear to be uncommon in Nebraska and as of April 2011, no residual newborn screening specimens have been requested by researchers.
Some parents would like to have their newborn’s residual dried blood spot kept for longer periods of time or would like for it to be available for research at a later time. Nebraska does not have the means to provide for longer storage. If a parent is interested in long-term retention of dried blood spots, they may request to have another filter paper specimen collected at the same time as the newborn screening specimen in order to store it elsewhere at the family’s expense.