States Utah

Utah currently screens for 50 conditions. Each state runs its program differently, for more detailed information please visit their website at http://health.utah.gov/newbornscreening/.

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What Conditions are Screened For in Utah?

About Newborn Screening in Utah

Program Overview:

Newborn screening is a special blood test done on each Utah baby. It is specifically designed to reduce the occurrence of conditions that alter health and quality of life and increase the risk of death due to certain metabolic, endocrine, and hematological conditions by identifying the disorder prior to the onset of symptoms. This allows treatment to begin before clinical symptoms (i.e. permanent brain damage, growth retardation, sepsis, or severe anemia) or death can occur in the newborn.

Utah collects two newborn screening specimens (formerly called the PKU test) which test for 37 disorders. The first screen is usually done between 48 hours and 5 days of life, or right before discharge from the hospital. The second screen is done between 7 and 28 days of age, usually at the two week well-child check with the baby's health care provider. Identifying and treating infants with these disorders early can help ensure a long, healthy life, so it is important to get these tests done correctly and on time.

How is Newborn Screening Paid for in Utah?

The cost of the newborn screening test is $102.99 per child, which covers the first and second screen. The fee is subject to change. Most health plans/health insurance will pay for the test, which is included in the hospital bill. You will not receive a separate bill from the NBS Program.

Policies and Resources

Opt-Out:

All babies born in Utah are required by law to receive Newborn Screening except in the case where parents object on the grounds that they are members of a specified, well-recognized religious organization whose teachings are contrary to the tests required by this section. If this applies, the objection to newborn screening form or a similar form containing the same information, which has been developed by your child’s birth institution, needs to be completed and sent to:

Newborn Screening Program
PO Box 144710
Salt Lake City, UT 84114-4710.

Support for families:

One of the concerns some families may have when they find out their child has a condition detected through newborn screening is the increased cost of health care for their loved one. Fortunately, Utah has various laws and programs which strive to make quality health care affordable for those with a condition.

For those with private accident and health insurance, Utah requires the plans to cover dietary products, such as medical formulas needed by some with an inborn metabolic condition, as a major medical benefit. There are established minimum standards of coverage for dietary products, including formulas and low protein modified foods, used for the treatment of inborn errors of amino acid or urea cycle metabolism. This coverage is provided at levels consistent with the major medical benefits provided under a disability insurance policy, which means some cost-sharing mechanism might be required such as a deductible or co-pay for the formula.

Also, The Utah Birth Defect Network is available to provide information about specific birth defects to families and health care providers. Referrals for medical and financial information are available. Specific services for families of affected children from birth to three years of age are provided by the Utah Early Intervention Program, located within the Bureau of Children with Special Health Care Needs, Utah Department of Health. Services include child health assessment, service coordination among providers and programs and agencies. Information on these services is available on the Utah Baby Watch website or by calling 801-883-4661 or 1-866-818-7096.

A further resource is the Utah Collaborative Medical Home, which is a project designed to provide information, tools and resources for Primary Care Physicians to enhance their ability to care for children with special health care needs. The Utah Collaborative Medical Home website offers additional information.

Storage and Use of Dried Blood Spots:

After the newborn screening tests are completed, there will remain some dried blood on your child’s card which was submitted to the lab. These are called “residual dried blood spots.” The specimen/information form submitted to the department becomes the property of the state of Utah, upon receipt by the Utah state public health laboratory. The residual dried blood spot card is securely stored as it still has beneficial public health uses, such as on-going quality assurance/quality control of the tests for these and other health disorders as well as research that seeks more effective ways to test and treat serious childhood diseases.

The department will protect the privacy of the newborns and their families and assure that all specimen/information forms submitted for screening are protected from inappropriate use or access. The blood spot sample is retained at the state public health laboratory for a period of time (minimum of 90 days) to assure accurate screening and for approved uses. Storage and release of blood spot card specimen or information is governed under Utah law and other federal and state requirements. For any use of the residual dried blood spot, identifying information is removed from the blood spot card and cannot be connected to the identity of the child. Identifying information linking a child to a particular blood spot card is not allowed without advance consent of the child’s parent(s), managing conservator or legal guardian(s) unless otherwise provided by law. The information form, which is kept separately from the residual dried blood spot, will be retained until the child is 22 years old. This form includes all demographic data, screen test results, confirmatory test results, nursing notes and other information that documents the child’s condition and status. After the 22 years, all records will be destroyed.

If you decide you do not want your child’s blood spot sample to be used for any other purpose after the newborn screening test and all necessary diagnostic testing has been completed, you may request the destruction of the blood spot sample. Completely fill out and submit the form, along with 1) a copy of the child’s birth certificate and 2) a copy of your driver’s license, state-issued identification card or passport to the Newborn Screening Program, PO Box 144710, Salt Lake City UT 84114-4710. Or contact us at 801.584.8256 to send you a form.

If you have any questions regarding any of the above information, please contact the Utah Newborn Screening Program at 801.584.8256.

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

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