Florida currently screens for 54 conditions
The Florida Program
Each state runs its program differently, for more detailed information please visit their website here.
The state of Florida does not have a brochure available. You can find more state specific information at their website.
What Conditions are Screened For in Florida?
Amino Acid Disorders
Benign Hyperphenylalaninemia (H-PHE)
Biopterin Defect in Cofactor Biosynthesis (BIOPT-BS)
Biopterin Defect in Cofactor Regeneration (BIOPT-REG)
Citrullinemia, Type I (CIT)
Citrullinemia, Type II (CIT II)
Classic Phenylketonuria (PKU)
Maple Syrup Urine Disease (MSUD)
Tyrosinemia, Type I (TYR I)
Tyrosinemia, Type II (TYR II)
Tyrosinemia, Type III (TYR III)
Fatty Acid Oxidation Disorders
Organic Acid Conditions
About Newborn Screening in Florida
Florida screens all newborns for various conditions soon after birth. While most babies arrive into the world healthy, there are a few newborns who have a rare health problem. Before leaving the hospital, a few drops of blood are taken from the baby’s heel. The hospital will send the blood sample to the Florida Newborn Screening Laboratory in Jacksonville, Florida. All results are sent back to the hospital or birthing center. The baby’s doctor will be given the results by the hospital or the results can be obtained from the Florida Newborn Screening Results (www.fnsr.net) website. If the screening process can find problems early, qualified health care professionals in Florida may prevent serious medical problems like intellectual disability or death from happening to the newborn.
Since early detection and treatment are so important with these conditions, it is important that families tell the hospital the correct name and phone number for the baby’s doctor so the family can be reached if screening results are abnormal. If the doctor contacts the family, it does not mean the newborn has a serious condition, but it is important to follow the instructions immediately in order to determine if treatment will be necessary. Families are encouraged to ask about the results when seeing a newborn’s doctor for the first appointment.
How is Newborn Screening Paid for in Florida?
Newborn Screening services in Florida are jointly funded through a $15.00 fee paid by birthing facilities for each live birth and the billing of the newborn screening tests performed by the Florida Newborn Screening Laboratory. Medicaid and private insurance companies are billed for the newborn screening tests. The Florida Newborn Screening Program does not bill families without insurance coverage.
Policies and Resources
While it is not encouraged, parents may refuse newborn screening for any reason. The person responsible for collecting the specimen must collect a written refusal from the parent that must be put in the medical record.
Support for families:
A concern some families may have when finding out their newborn has a condition detected through the Newborn Screening Program is the increase in health care costs. Fortunately, Florida has many laws and programs which make treatment of these conditions more affordable for families who are looking to provide the best care to their loved ones.
If a newborn is covered by private health insurance, the insurance must cover enteral formulas to treat certain inherited diseases and up to $2,500 annually for low protein modified foods to treat amino acid disorders and organic acid disorders until the age of 24. There may be an additional premium or co-pay for this medical food coverage.
Also, Florida’s Children with Special Health Care Needs Program is administered by the Office of Children's Medical Services Managed Care Plan (CMS Plan) which serves Title XIX Medicaid eligible children and TXXI Florida KidCare eligible children. The CMS Plan is designed to serve children under age 21 whose serious or chronic physical or developmental conditions require extensive preventive and ongoing care and, provides children with special health care needs a family-centered, comprehensive, and coordinated system of care.
Storage and Use of Dried Blood Spots:
After a newborn has been screened for all conditions, both the blood specimen and the related information will be kept for a specific period of time. The Newborn Screening Laboratory must keep records of screening results and follow-up testing for 6 years. The blood specimen is kept for six months, then the specimen is destroyed.