Your Baby Has Newborn Screening: The ACA and Newborn Screening

What is Newborn Screening?

Newborn screening includes tests done on your baby before he or she leaves the hospital. These screening tests check for serious conditions in your baby. The tests will look for certain genetic and metabolic conditions, hearing loss, and specific heart problems.

A baby born with one of these conditions may not show any symptoms right away. However, the baby usually develops serious problems if he or she is not treated. Newborn screening helps to identify your baby early so that treatment can begin as soon as possible.

All babies born in the US get newborn screening. However, each state decides which conditions to screen for in babies born in their state. This is called the state’s newborn screening panel. To find out what conditions are on your state’s newborn screening panel, go to:

Who Decides Which Conditions Should be Screened for?

In 2003, the US Department of Health and Human Services created a group called the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children. This group is made up of health care professionals, community advocacy groups, public health staff, and laboratory staff. The purpose of this group is to advise the US Secretary of Health about newborn screening.

One job of the Advisory Committee is to recommend conditions that should be included on newborn screening panels. The states then use these recommendations to decide which conditions to include on their state newborn screening panels. This recommended list of newborn screening conditions is called the Recommended Uniform Screening Panel (RUSP). To see the list of conditions included in the RUSP, go to:

How Does the Affordable Care Act Affect Newborn Screening?

Under the ACA, all non-grandfathered insurance plans must cover newborn screening for the RUSP conditions at no cost to you. This means that you can ask for a newborn screening test for any of the RUSP conditions. Your insurance must pay for the newborn screening test even if your state does not usually screen for the RUSP condition. Also, any conditions that the Advisory Committee adds to the RUSP in the future must also be covered by non-grandfathered plans. However, the state does not have to provide follow-up services for conditions that are not on the state panel.

Grandfathered health plans do not have to cover newborn screening without costs to you. Newborn screening may still be covered, but you may have a co-pay or deductible. For more information about grandfathered health plans, click here.

What if My Child is Diagnosed with a Newborn Screening Condition?

The ACA protects people with a newborn screening condition. The ACA:

For more information about how the ACA helps children with special health needs, click here.

Where Can I Find More Information?

This site has general information about newborn screening, and wonderful fact sheets about conditions included in the newborn screening panels:

The Save Babies Through Screening Foundation has great information about newborn screening:

Baby’s First Test is a family-friendly site with lots of information about newborn screening: