What Conditions are Screened For in Hawaii?
Amino Acid Disorders
Fatty Acid Oxidation Disorders
Organic Acid Conditions
About Newborn Screening in Hawaii
The Department of Health’s Hawaii Newborn Metabolic Screening Program has been in existence since 1986 when infants were tested only for phenylketonuria and congenital hypothyroidism. Currently, the Department of Health’s Newborn Metabolic Screening Program tests all babies born in Hawaii for 33 metabolic conditions.
Newborn metabolic screening is so important because many of these conditions do not show any signs at birth. They may affect your child’s mental and physical growth before your child’s doctor knows your child has the condition. Some conditions cause intellectual impairments and even death. Fortunately, when they’re caught early through newborn screening, available treatments can begin immediately, and your child will have a much greater chance of a higher quality of life.
Please note that financially eligible families who have no other resources may receive financial assistance for newborn screening through the Children with Special Health Needs Branch (CSHNB). Comprehensive medical and care coordination services are available for children diagnosed with the disorders detected through newborn screening if families meet CSHNB guidelines.
How is Newborn Screening Paid for in Hawaii?
The Department collects a fee of $99 for each initial newborn screening kit. Most health insurance pays for the newborn test. No infant born in Hawaii shall be denied newborn screening testing because of the inability of the infant’s parent or guardian to pay the fee for newborn screening testing. If you cannot afford the cost of the test, please call the Hawaii Newborn Metabolic Screening Program at (808) 733-9069.
Policies and Resources
The parent, guardian, or other person having custody or control of the child may refuse the newborn screening tests for their infant on the grounds that newborn screening tests conflict with the religious tenets and beliefs of the parent, guardian, or other person having custody or control of the child. The medical implications of that refusal shall be included on a special refusal form provided by the department. The parent, guardian, or other person having custody or control of the child shall sign the refusal form. A copy of the refusal form shall be retained in the newborn’s medical record and a copy shall be sent to the department.
Support for families:
One of the concerns many families face when they learn their child has a condition that is detected through newborn screening is access to appropriate health care. Fortunately, Hawaii provides services and laws that help families get the care their children need.
The Children with Special Health Needs Program is part of the Hawaii Department of Health and provides assistance to families and individuals with chronic health conditions that require specialized medical care, such as metabolic disorders. The program helps families that have children with special health care needs who are having difficulty in coordinating or obtaining health care services, who cannot get services elsewhere, such as nutrition therapy for metabolic disorders, or who cannot get medical services on their island. The program can arrange appointments at Neighbor Island pediatric specialty clinics or arrange travel to another island for services. Children must be under 21 and a resident of Hawaii with a chronic health condition that will last for more than one year. Families or individuals who are uninsured, whose insurance does not pay for needed services, or who are having difficulty affording services are welcome. Coordination of services will be provided regardless of income but to receive financial assistance, funds must be available in the program and families must meet program financial requirements. To learn more, please visit the Children with Special Health Needs Branch website. To find out more about the program or to obtain a referral, please contact the Children with Special Health Needs Program located at 741 Sunset Avenue, Honolulu, HI 96816 and CSHNP is reachable by phone or TTY at 808-733-9055. You may also visit the website of other state programs that could benefit an individual with a condition confirmed by newborn screening.
In addition to state support programs, Hawaii also helps alleviate the cost of care for a child with a chronic metabolic condition by requiring all health insurance policies, group health plans and other medical service plans to cover prescribed medical foods and low protein modified foods, which are medically necessary for those who have certain metabolic conditions. The insurance company must cover at least 80% of the cost of the medical foods. Also, those who qualify for state-provided health programs or public assistance will have their medically necessary foods provided for them.
Storage and Use of Dried Blood Spots:
After your child’s dried blood spot has been tested for all of the conditions specified by the newborn screening program in Hawaii, some dried blood, called “residual dried blood spots” are left over. The designated laboratory will implement and follow procedures for keeping all residual dried blood spots under adequate storage conditions to allow for retesting for quality assurance purposes. Hawaii has designated a dried blood spot retention time of one year.