CCHD Screening Legislation Heats up on State Level

After years of medical specialty societies and patients advocating for universal screening of critical congenital heart defects (CCHD) in newborns, pulse oximetry testing has finally become routine in the majority of states. Since 2012, 30 states have adopted CCHD screening laws and 39 states will have laws requiring newborn screening for CCHD using the pulse oximetry test by July 1, 2014.

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Significant progress has been made on the state level for advancing CCHD screening legislation in the first half of 2014. In June, after a four year battle, the Pennsylvania General Assembly sent legislation to the governor after a unanimous vote in the Senate. A CCHD/pulse oximetry requirement has also been finalized by regulation in Montana. In Washington, the Department of Health recently held a hearing on whether the state should adopt CCHD screening. In each instance, the ACC chapter and ACC National partnered with the American Academy of Pediatrics (AAP) and the American Heart Association (AHA) and volunteers testified and met personally with elected officials to advocate for legislation.

In March, Massachusetts passed S.B. 1919, which requires all newborns to be screened for CCHD before being discharged from a birthing facility or hospital. The law directs the Massachusetts Department of Public Health (MDPH) to develop regulations for pulse oximetry testing for CCHD. The law also provides future flexibility by permitting the department to approve another test for CCHD screening if that test is at least as accurate, widely available and cost-effective as pulse oximetry screening. The MDPH regulations must consider evidence-based guidance, including recommendations issued by the federal Health and Human Services Discretionary Advisory Committee on Heritable Disorders in Newborns and Children. Should the parent or guardian object to having their newborn screened based upon “sincerely held religious beliefs” pulse oximetry testing will not be performed. The law takes effect Jan. 1, 2015 or earlier depending upon issuance of the regulations. Finally, the MDPH must review the protocols required by S.B. 1919 and the implementation of these protocols as part of its hospital licensure and birthing facility licensure review processes. Read up on other states that have recently passed CCHD screening legislation.

Also in March, New Mexico passed H.B. 9, which requires all hospitals and birthing facilities in the state that have a newborn nursery to perform a CCHD screening test on every newborn prior to discharge. If a parent or guardian objects to the tests, the screening will not be done.

In February, Virginia passed H.B. 387, a bill that requires all hospitals in the state that have a newborn nursery to perform a CCHD screening test on every newborn in its care when the child is at least 24 hours old but no more than 48 hours old. When the infant is discharged prior to reaching 24 hours of age, CCHD screening must be performed prior to discharging the infant. If a parent or guardian objects to the test on the grounds that the test conflicts with his/her religious practices, the screening will not be done. The bill also directs the Board of Health to convene a workgroup of all stakeholders, including the Virginia Chapter of the ACC, to provide information and recommendations for the development of regulations to implement the act within 280 days of enactment.

The Arizona House and Hawaii Senate also both unanimously voted to pass CCHD screening legislation earlier this year. Finally, Wisconsin enacted the first part of the two step process by passing a bill that empowers the health department to promulgate congenital screening regulations.

Pulse oximetry has proven to be a safe, effective, inexpensive and noninvasive method of screening for CCHD, but it has been a long road to ensuring its widespread use. Legislative efforts ramped up in 2011 when then Health and Human Services Secretary Kathleen Sebelius recommended adding CCHD to the Recommended Uniform Screening Panel, a list of hereditary and congenital conditions that are recommended nationally for inclusion in each state’s newborn screening program. Following the recommendation, the ACC, AAP and AHA jointly released a whitepaper on the benefits of pulse oximetry testing.

Passing CCHD screening legislation is one of the College's state advocacy priorities and the ACC is continually working with local ACC Chapters, ACC's Adult Congenital and Pediatric Cardiology Section, and partners such as Mended Hearts and Mended Little Hearts to ensure the voice of CCHD patients and caregivers is heard on the state level as well as Capitol Hill.

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