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What Conditions are Screened For in California?

About Newborn Screening in California

Program Overview:

Newborn Screening is recognized nationally as an essential preventive health measure. All individual states in the nation as well as the District of Columbia have established newborn screening programs. The conditions screened for by the program have varying degrees of severity. If identified early, many of these conditions can be treated before they cause serious health problems in your child. Treatment for metabolic disorders varies by the condition including close monitoring of a person's health, medication, dietary supplements, and avoidance of fasting or special diets.

Prior to leaving the hospital, a few drops of blood from the newborn's heel are collected on filter paper. Testing of over 15 million babies has established this as a simple and safe test. The sample is sent to one of seven regional laboratories that contract with the state of California for testing. The laboratories enter demographic data and test results via computer into a web-based screening information system (SIS). SIS is designed to detect and minimize data entry errors. Laboratory work is subjected to both computerized and manual quality control checks before test results are released.

How is Newborn Screening Paid for in ­­California?

Currently, the cost of the test in California is $102.75. Medi-Cal, health plans and most private insurance will pay for the test, which is included in the hospital bill. You will not receive a separate bill from the NBS Program.

Parents can get the test results from the baby's doctor or clinic. It takes about two weeks for the doctor to receive the written results but a disorder with a positive screen will be called immediately after the test is run. If the baby needs more tests, parents will get a letter or a phone call within a few days after discharge from the hospital. Parents who relocate soon after their baby is born should make sure that the baby's doctor or the clinic staff has their new address and phone number as it is very important to be available if the test indicates your newborn needs further attention. Positive test results are immediately telephoned to a follow-up coordinator at one of the Newborn Screening Area Service Centers throughout the state. The coordinator contacts the newborn's physician to arrange for confirmatory testing. If the test(s) indicate that the baby has a condition, the coordinator will provide the doctor with recommendations on diagnosis and treatment and assist with referrals to specialists/special care clinics.

Policies and Resources

Opt-Out:

While it is highly discouraged, you may say “no” to the newborn testing of your child if you have religious objections to this testing. This objection to the testing must be in writing. By signing the form, you acknowledge that your hospital, doctor, and clinic staff are not responsible if your baby develops problems because of the lack of this vital testing process.

Support for families:

One of the concerns some families have when they find out their child has a condition is cost of care. Fortunately, California has many programs in place to help lessen the financial burden on a family caring for a child with a condition.

First, the Genetically Handicapped Persons Program (GHPP) is a health care program within California Children's Services (CCS) which provides medical care and other related services for persons with the genetically handicapping conditions. The programs provide diagnostic and treatment services (inpatient, outpatient and home) to CCS clients under 21 years of age who have GHPP eligible conditions. Please visit the GHPP website to see if your child has an eligible condition.

If you would like help with any step of the process, GHPP can be reached at the Genetically Handicapped Persons Program, MS 8100, P.O. Box 997413 Sacramento, CA 95899-7413 and by phone at 916-327-0470 and 1-800-639-0597.

Also, Medi-Cal will cover nutritional supplements and replacements if they are used as a therapy to prevent a serious disability or dealt in a child with a condition that requires a special diet.

Lastly, private insurers in California who provide health care service plan contracts must cover treatment of PKU. Covered treatment for individuals with the condition includes both medically necessary formula and special food products used in lieu of normal foods.

For general questions about various services available for you and your family, please contact your family doctor or the Department of Health Care Services at 916-445-4171.

Storage and Use of Dried Blood Spots:

After the newborn screening tests are complete, there will be parts of the blood spots left over which are called “residual dried blood spots.” All information related to the newborn screening process is considered confidential property of the State. Your child’s collecting information may only be used for medical intervention, counseling or specific research projects which the California Board of Health approves. The approved research team is required to obtain written consent from the parents of the child before any information may be disclosed to another individual or group. The law also allows the Department to use the residual spots for anonymous research studies unless you specifically request in writing that your information or specimen not be used.

CDPH can use health information about you or your newborn to provide health care services, to obtain payment for screening, for administrative purposes, and to evaluate the quality of care that you or your newborn receives. Neither the information or residual spots will be sold. You are able to opt out of having your child’s newborn screening records used for research. You can revoke your authorization at any time by contacting the Chief of the Genetic Disease Screening Program at 850 Marina Bay Parkway, F175, Richmond, CA 94804.

The Department may change its policies at any time, subject to applicable laws and regulations. You may request a copy of the current policies or obtain more information about California’s privacy practices by contacting the Chief of the Genetic Disease Screening Program at 850 Marina Bay Parkway, F175, Richmond, CA 94804 or consulting the Department's Privacy Office website.

To see a copy of the blood spot card used in California click here.

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