In this Section:
What conditions are screened for in Illinois?
Amino Acid Disorders
Fatty Acid Oxidation Disorders
Organic Acid Conditions
About Newborn Screening in Illinois
Most babies born in the United States are healthy, but there are some babies who may seem fine at birth that have a serious condition which may not have any obvious symptoms. If detected early, some of the problems, such as illness, intellectual disability, poor growth or death can be prevented. After your baby is at least 24 hours old, a nurse from the hospital will collect a few drops of blood from your baby’s heel. If your baby goes home from the hospital sooner than 24 hours of age, or is born at home, you should make an appointment with your child’s doctor to make sure the test is done at the proper time. This screening is most accurate soon after your baby is born, so if your baby is born at home, it is important to make arrangements to have this done before your baby’s birth, or as soon as possible after your baby’s birth.
These tests should be considered screening tests only. Screening can indicate the possibility that an infant may be at risk for a disorder included in the testing panel. Additional diagnostic tests are necessary to determine if the infant with an abnormal test actually has a disorder. Before you leave the hospital, make sure they have an up-to-date phone number or address so they can find you with follow-up instructions, if necessary. Since getting your newborn started on a treatment plan as soon as possible is so important, it is necessary for parents to follow any physician instructions regarding retesting or treatment options immediately. If you child does have a condition, the sooner treatment begins the better your child’s chances are at living a full, healthy life.
How is Newborn Screening Paid for in Illinois?
The NBS Fee is $88.00 per child. In addition to testing, the fee covers administration, follow-up services, and treatment. The Illinois Department of Public Health bills birthing hospitals or other entities that submit a sample for newborn screening, and does not bill private insurance or Medicaid directly. The hospital or submitter must then collect payment from the parent or responsible party. No mandates exist requiring separate coverage for newborn screening by private insurance or state-funded entitlement programs; this fee is usually included as part of the bundled reimbursement related to a birth. In cases of non-hospital, “home births”, the state newborn screening program does bill parents directly, which is usually paid out of pocket. In 2012, the cost may increase to cover new conditions screened for at that time.
Policies and Resources
Generally, parents do not have the right to refuse this test. In Illinois, newborn screening of all infants is mandated and the only allowable exemption is on religious grounds. This is highly discouraged as infants with these disorders can appear normal at birth and may only manifest signs or symptoms at a later date. If a parent does want to object because it conflicts with their religious beliefs, the objection must be presented to the physician in writing.
Support for families:
One of the concerns many families experience when they find out their child has a condition detected by newborn screening in the increased health care cost. The Illinois Department of Public Health recognizes this and provides some services to help lessen the financial burden for families. If your child has a condition for which special formula is indicated as medically necessary, the Department of Health will provide the formula for the child if it is not available free of charge through other state agencies. For more information about services available for your newborn, contact the Genetics and Newborn Screening program located at 535 W. Jefferson, 2nd Floor Springfield, IL 62761, 217-785-8101, TTY (hearing impaired use only) 800-547-0466.
In addition to medically necessary formula, long-term follow-up care will be necessary for most conditions. After discussing their child’s condition with their health care provider or newborn screening program director, a family in Illinois may determine they need the assistance and care provided by a genetic specialist. A comprehensive team of health care professionals with specialized training in genetics provides these services. Once it has been determined that a family and/or client may benefit from genetic services, the public health genetic coordinator will contact the genetic center or satellite clinic where these services are available. Communication between the coordinator and the genetic center will determine whether further evaluation is necessary. If a referral is made, certain information will be required by the genetic center. Costs for genetic consultations vary depending on the type of services provided.
Each genetic center has a fee scale, and reimbursement through third party payers is available for some services. Private insurance, the Illinois Department of Human Services and the Division of Specialized Care for Children at the University of Illinois and the All Kids or Family Care Programs are examples of potential payment resources. Most genetic centers will attempt to work with the family to provide the necessary services. However, if there are any financial concerns, they should be discussed prior to the consultation so that efforts can be made to best accommodate the needs of the family. The Illinois Department of Public Health does not have funding available to assist in the cost of genetic testing or services. For more information, please contact Illinois Department of Public Health, Genetics Program, 535 W. Jefferson, 2nd Floor Springfield, IL 62761, 217-785-8101, TTY (hearing impaired use only) 800-547-0466.
Storage and Use of Dried Blood Spots:
Specimens that have been reported as “positive” for any one or more tests performed are kept for a minimum of five years. After designated storage time has elapsed, specimens shall be decontaminated and discarded. Specimens that have been reported as “borderline” and those specimens that have undergone repeat testing shall be kept under refrigeration for a minimum of four months. Total storage time is no less than four months from the date of receipt. After designated storage time has elapsed, specimens shall be decontaminated and discarded. Any other specimen(s) identified as “positive” by newborn screening follow up staff at a later time shall be stored for a minimum of five years. After designated storage time has elapsed, specimens are decontaminated and discarded. Specimens reported “negative” or “unsatisfactory” are stored under refrigeration for a minimum of one week after reporting. Thereafter, they are stored for a minimum of two months. After designated storage time has elapsed, specimens are decontaminated and discarded. After designated storage time has elapsed, specimens shall be decontaminated via autoclaving. Specimen cards are shredded or otherwise made unrecognizable before being discarded.