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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. In California, an extensive newborn screening panel is completed on nearly half a million children born in the state each year. If identified early, many heritable or genetic conditions can be treated before they cause serious health problems.

Before leaving the hospital, a few drops of the newborn's blood from a heel stick are collected on filter paper.  The sample is sent to one of five regional laboratories that contract with the state of California for screening.

Out-of-range or inadequate screening results are immediately telephoned to a short term 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 a repeat or a confirmatory test, and assists with a referral to an approved California Children’s Services Special Care Center, if warranted.

Parents can get the results from the baby's doctor or clinic. It takes about two weeks for the doctor to receive a hard copy of the results in the mail.  You should make sure that the hospital has the name of your baby’s doctor and that the doctor has your current contact information.

How is Newborn Screening Paid for in ­­California?

Currently, the cost of screening in California is $129.25. Medi-Cal, health plans, and most private insurance will pay for screening, which is usually included in the hospital bill (rather than a separate billing from the Newborn Screening Program).

Policies and Resources

Opt-Out:

While it is highly discouraged, you may say “no” to screening of your newborn if you have religious objections to this testing. You must sign a test refusal form. The form states that not having the test done can result in serious illness or permanent damage to your child and that you accept responsibility should this occur.

Support for families:

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

The California Children’s Services (CCS) program covers diagnostic testing and treatment services, medical case management, and physical and occupational therapy services to children under age 21 with CCS-eligible medical conditions.   All conditions detected by newborn screening are CCS-eligible. The CCS program is administered as a partnership between county health departments and the California Department of Health Care Services (DHCS).

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

Storage and Use of Dried Blood Spots:

California, like many other states, stores residual dried blood spots. After newborn screening has been completed, the filter paper cards with the residual dried blood spots are labeled with a unique bar code but no other identifying information.

The Newborn Screening Program uses residual blood spots: for quality control testing to ensure the testing validity, to evaluate and improve the current screening program, and to develop new tests to add to the panel.  In addition, California law requires the program to make the samples available to approved investigators for studies of diseases in women and children.

You may request that your baby’s blood sample should not be used for research or be destroyed by contacting the Newborn Screening Program.

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