Pennsylvania currently screens for 33 conditions.Each state runs its program differently, for more detailed information please visit their website at http://www.health.pa.gov/My%20Health/Infant%20and%20Childrens%20Health/Newborns%20and%20Infants/Pages/Newborn-Screening-and-Follow-Up-Homepage.aspx#.VSMIwWbBfyI.
Here is a brochure for the state of Pennsylvania. Brochure »
What Conditions are Screened For in Pennsylvania?
Amino Acid Disorders
Fatty Acid Oxidation Disorders
Lysosomal Storage Disorders
Organic Acid Conditions
About Newborn Screening in Pennsylvania
Having a baby is a very special time in every parent’s life. Shortly after your baby is born, a special test is done to protect your baby’s health. In the first few days of your baby’s life, a small drop of blood is taken from your baby’s heel and tested by a laboratory for special medical conditions. Many symptoms of these conditions may not be present at birth.
This process is called newborn screening. Newborn screening provides early identification of these conditions for treatment in order to prevent serious health problems such as physical disabilities, intellectual disability, and in some cases, possible death.
Because this is so time-sensitive, it is important that you leave your doctor with a current phone number and address for them to reach you. If your doctor contacts you after you and your baby have left the hospital, it is vital that you follow up as soon as possible. If your child does have a condition, they will need to begin treatment immediately to increase their chances at having a full, healthy life.
How is Newborn Screening Paid for in Pennsylvania?
Pennsylvania does not charge for screening for the inherited conditions required by law. Parents may choose to have their newborn screened for additional disorders at the same time. This screening panel is commonly referred to as supplemental screening. Supplemental screening tests may be covered by your insurance carrier. While most hospitals and birthing centers include the cost of basic and supplemental newborn screening in their rate and recover costs from insurers, it is possible that people using alternative birthing situations might be expected to pay for supplemental screening.
Policies and Resources
All newborns must participate in newborn screening unless the parents object on religious grounds. Health care providers must place a written statement of refusal, signed by the parent or guardian, in the child's medical record. Health care providers also must inform the Department of the number of patients who were not screened and must provide an explanation.
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 increased cost in health care. Fortunately, Pennsylvania has many laws and programs which have been put in place to make treatment of these conditions more affordable for families who are looking to provide the best care to their loved ones.
In Pennsylvania, private health insurance policies must cover nutritional supplements for children with PKU, branched-chain ketonuria, galactosemia and homocystinuria. If an individual works outside the commonwealth of Pennsylvania or the individual’s employer maintains a health insurance policy for the individual as an employee benefit, private health insurers do not have to cover that individual. In some instances, a normal copayment for covered services may apply. However, these nutritional supplements must be exempt from deductibles.
The Pennsylvania Newborn Screening and Follow-Up Program manages a statewide pharmacy metabolic formula distribution system that supplies formula up to the age of 22 to Pennsylvanians diagnosed with a PKU disorder.
Pennsylvania also seeks to help families navigate the complex system of available health services for their loved ones. Newborns are referred to the appropriate health care provider to receive proper medical evaluation, confirmatory testing, diagnosis and treatment. The program contracts with treatment centers to provide newborn screening evaluations and medical services.
The Special Kids Network is available to improve access to services, provide comprehensive information for those seeking to identify services, and to foster the improvement or development of local services for children with special health care needs and their families. Children and youth identified with a special health care need are at increased risk for chronic physical, developmental, behavioral and emotional conditions that require services beyond what is required by children in general.
The Special Kids Network (SKN), Information and Referral (I&R) service connects individuals to resources and programs specific to their needs by making access to these resources easier for Pennsylvania families and providers. This information is made available by contacting the Pennsylvania Health and Human Services Call Center by phone 1-800-986-4550, email PA-SKN@Policy-Studies.com or through the HelpinPA public web portal.
The Special Kids Network System of Care (SOC) program addresses the delivery and availability of services in local communities. Needs or gaps in service for children and youth with special health care needs are identified and addressed together within the community to build better and more coordinated services. The System of Care Program can be reached by phone at 1-877-986-4550 or by email at firstname.lastname@example.org. More information about the program can also be found on the System of Care website.
Storage and Use of Dried Blood Spots:
After your newborn has been screened for all of the conditions, some blood will remain on the card, which is called a “residual dried blood spot.”
Pennsylvania retains the blood spot specimen for 8 months. The newborn screening laboratory, Department, or other entities involved in the newborn screening program may have access to test results during various stages of the newborn screening process and may not disclose any identifying information except to a parent or guardian or the designated health care provider. Neither the Department’s Bureau of Laboratories nor its contracted laboratories may conduct research using the blood spot specimens.
Disclosure by the Department is permitted for the purposes of service delivery or with the consent of a parent, guardian, or screened individual who has reached the age of majority.