What Conditions are Screened For in Arizona?
Amino Acid Disorders
Fatty Acid Oxidation Disorders
Carnitine Uptake Defect (CUD)
Organic Acid Conditions
About Newborn Screening in Arizona
Every baby born in Arizona is screened for certain inherited conditions within the first weeks of life. A newborn may appear healthy, but still have a serious condition that cannot be seen. If left untreated, these conditions can lead to slow growth, blindness, intellectual disability, and possibly death. Early detection and treatment can help prevent these serious problems. Every year, about 100 babies in Arizona are found to have a serious condition identified through newborn screening.
Arizona requires your newborn to be screened twice to help ensure accuracy, as some conditions are easier to detect on a subsequent screen. The first screening sample will be taken before your child leaves the hospital or within 2 days of life and the second will be taken between 5-10 days after birth, or at the first well baby visit, whichever comes first. For those newborns born at home, the health care provider present at the birth should collect the first screen. Parents should advocate for their newborn and make sure both screens are completed within the appropriate time frames.
In Arizona, approximately 98% of all infants are screened for hearing loss prior to hospital discharge. The results of all hearing screens and subsequent tests for hearing loss performed on newborns and infants must be reported to the Office of Newborn Screening (ONBS) program within seven days by the provider. For newborns born at home or in a birth center, the health care provider should make arrangements for a hearing screen as soon as possible but no later than 30 days of life.
Your newborn’s doctor will be in charge of contacting you if the newborn screening is abnormal. Please talk to your baby’s doctor about all test results and make sure the blue immunization card is properly marked with those results. Since early treatment is so important in order to avoid negative effects on your child’s health, make sure the hospital or doctor has a current phone number and address where they can reach you after your newborn’s birth. If you do not have a phone, leave the number of a friend who knows how to get in touch with you. If your newborn’s doctor contacts you, follow their instructions immediately. If your child does test positive for a newborn screening condition, keep all doctor’s appointments and work closely with the doctor to obtain the treatment necessary for your child.
How is Newborn Screening Paid for in Arizona?
Newborn screening tests cost $36 per child for the first screen and $65 for the second screen. The first screen will be billed to the hospital (typically included within the birth package) and the second will be billed to the responsible party, which is typically the child’s health insurance provider. If the parents are uninsured or underinsured, they may be billed to cover the cost of testing. If the newborn is still at the hospital when the second screen is performed, it may be covered by the hospital.
Policies and Resources
Arizona law requires providers to order newborn screening for all newborns born in the state for these potentially fatal conditions. If after hearing all the benefits of newborn screening and the risks involved in refusing testing, a parent may refuse. If you choose to refuse, your provider may ask you to sign a waiver in which you accept responsibility for adverse consequences. A waiver is not currently required by law. This refusal will be noted on the specimen collection card and sent to the Newborn Screening Follow-Up Program.
Support for families:
One of the concerns some families may have when they find out their child has a condition detected through the newborn screening program is the increase in health care costs. Arizona has many laws and programs which have been put in place to help make treatment of these conditions more affordable for families who are looking to provide the best care to their loved ones.
Generally, Arizona Health Care Cost Containment System (AHCCCS), Arizona’s Medicaid program, provides medical coverage, including doctor's office visits, hospitalization, prescriptions, lab work, and behavioral health services to families. For a household to qualify, it must have net income below the federal poverty threshold and include a child under the age of 18 (or age 18 if the child is a full-time student in secondary school and expects to graduate by age 19).
More specifically, the Children’s Rehabilitative Services (CRS) Program provides medical treatment, rehabilitation, and related support services as a carve-out to Medicaid recipients with qualifying chronic and disabling conditions under age 21. Care is provided to more than 26,000 children and adolescents with special health care needs (CSHCN) through four family-centered, multi-specialty interdisciplinary clinics. CRS covers over 350 chronic and disabling health conditions, including cerebral palsy, cleft lip/cleft palate, spina bifida, cystic fibrosis, sickle cell anemia, metabolic and endocrine disorders, and many congenital anomalies. CRS manages a statewide network of specialists to provide timely access to CSHCN throughout the state.
The Office for Children with Special Health Care Needs (OCSHCN), a program of the AZ Department of Health Services, is established to help families navigate the healthcare system and ensure your child gets the necessary services. Contact them directly or visit their website at http://azdhs.gov/prevention/womens-childrens-health/ocshcn/index.php
Another organization, Raising Special Kids (RSK) is also designed to assist Arizona families with children requiring specialty care. Contact them directly at http://www.raisingspecialkids.org/.
Storage and Use of Dried Blood Spots:
Newborn screening bloodspot specimens and attached information submitted to the Arizona Department of Health Services (ADHS) are the property of the ADHS. ADHS maintains a central database of newborns from the newborn screening process that includes all information collected at the time of screening. The information stored in the central database is confidential but may be disclosed for public health purposes allowed by Arizona law.
Access to the actual specimens is restricted to ADHS employees and contractors approved by the Newborn Screening Program Manager as necessary to meet specific program needs. All applicable laws, regulations, and policies safeguarding the privacy and confidentiality of medical information are followed by those with access to these specimens and attached information. Specimens are stored at room temperature for 90 days and then made unidentifiable, through a process called autoclaving, and then are discarded. During the 90-day storage period, residual dried blood may be used for lab methodology development, validation, or other quality assurance testing. Specimens of interest, such as confirmed cases, may be frozen and retained longer for internal quality assurance purposes.
Arizona’s regulations require newborn screening results to be confidential as they are subject to the general health privacy statutes. However, as part of a HIPAA-exempt public health entity, the Newborn Screening program is able to lawfully receive or disclose confidential information used in the newborn screening follow-up process without obtaining consent from parents. Aside from the follow-up process, statutes prohibit the disclosure of confidential health information, which includes newborn screening results, without written consent from the individual or their legal guardian. However, as discussed above, Arizona’s health department may still disclose confidential information for scientific research or legal proceedings.