By: Anna Eames and Rachael Salley
Each of the 50 states legally requires infants to be tested through newborn screening. While some conditions are tested for in all states, individual states decide which conditions will be part of the screening. A committee known as the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) create what is known as the Recommended Uniform Screening Panel, or RUSP. The RUSP is a list of diseases and conditions that the SACHDNC highly recommends for inclusion in a state screening panel. States use the RUSP to guide their decision-making process when creating their panels, but they are not legally required to include any particular conditions.
Types of Conditions Screened For
In 1968, a list of criteria was published for the adoption of a condition for newborn screening. While recently there has been discussion about modifying these criteria, they are still used as guidelines when discussing conditions to be added to various panels. The criteria are as follows:
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The condition should be an important health problem.
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There should be an accepted treatment for patients with the disease.
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Facilities for diagnosis and treatment should be available.
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There should be a recognizable latent or early asymptomatic stage.
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There should be a suitable test or examination.
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The test should be acceptable to the population.
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The natural history of the condition, including development from latent to declared disease, should be understood.
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There should be an agreed upon policy on whom to treat as patients.
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The cost of the case-finding (including diagnosis and treatment of patients diagnosed) should be economically balanced in relation to possible expenditure on medical care as a whole.
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Case-finding should be a continuous process and not a “once and for all” project.
State Screening Panels
In the context of newborn screening, a “panel” is the list of conditions that the state public health department has chosen to test for. In addition to using the RUSP as a guide, each state must consider other factors when deciding which conditions to include in its panel. Some of these factors include the frequency with which the disorder is found in the state, parent testimonies, as well as funding and other financial resources available to the state newborn screening program. While each state does select its own panel, the affordable care act provides coverage for any test included on the RUSP, and parents are able to request additional screens that their state might not regularly use.
Find out what conditions your state screens for with this map from Baby'sFirstTest.org.
Financing
Each state finances its newborn screening program differently. Some states cover the cost of the screening and others charge the parents at various prices. Most health insurance companies will cover the cost of newborn screening either in part or in full. Other states have the cost covered by the hospital in which the baby is born. If parents are charged for testing and the price is not affordable to them, most states provide some form of financial assistance to low-income families. However, a baby will receive newborn screening regardless of a parent’s ability to pay.
For more information on newborn screening visit www.BabysFirstTest.org
