A Landmark Year for Newborn Screening: The Affordable Care and Patient Protection Act (ACA) Contains Provisions That Expand Newborn Screening Options for Families through Insurance Coverage. This Is a Positive Step Forward for Newborn Screening and for Families. However, Confirmatory Testing and Follow-Up Care Are Not Included in the Provision

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The United States began screening newborns for genetic conditions in the 1960s. Since then, many technological innovations have emerged from these state-run programs. The Centers for Disease Control and Prevention recently recognized newborn screening as one of the "Ten Great Public Health Achievements" 1 of the past decade, and this past year was a particularly exciting one for newborn screening.

The Affordable Care and Patient Protection Act

The Supreme Court recently upheld the Affordable Care and Patient Protection Act (ACA). The Act contains provisions that expand newborn screening options for families through insurance coverage. Under the law (Section 2713), parents can request newborn screening for any and all conditions that have been on the Department of Health and Human Services' Recommended Uniform Screening Panel (RUSP) for at least one year, and the cost must be covered by insurance. For example, the new law allows parents to have their newborns screened for critical congenital heart disease and severe combined immunodeficiency with no out-of-pocket expenses. These two conditions were recently added to the RUSP--in September 2011 and May 2010, respectively--and are not currently on all state panels.

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This is a positive step forward for newborn screening and for families. However, confirmatory testing and follow-up care are not included in the provision. This means that a family may need to cover the costs associated with additional testing and care if they receive a positive newborn screening result.

BabysFirstTest.org

Launched in September 2011, Baby's First Test is an essential newborn screening resource for families and healthcare providers. BabysFirstTest.org provides support and information for every step of newborn screening, from screening procedures to interpreting test results to living with a condition. The website features an easy-to-use, clickable map, which provides state-by-state information on newborn screening procedures. Parents now have access to a list of every genetic condition screened for in their state, an overview of their state screening program and costs, and relevant policies and resources. From there, you can use the conditions pages to find a description of any disorder, along with early signs, treatment, and family experiences.

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Most important, Babys FirstTest.org aims to be accessible to every family. It features scientific descriptions in layman's terms, an interactive blog, and a strong social media presence so you have a variety of ways to find and interact with the information you need.

Consumer Task Force

The Consumer Task Force is an innovative team brought together by Baby's First Test to engage relevant stakeholders with an interest in newborn screening policies, activities, and current events. …