Breakdown of the Newborn Screening Saves Lives Reauthorization Act of 2021
Alexis Morabito, a Master of Public Health candidate at George Washington University and team member at One Heart Health, provides a breakdown of the recently passed Newborn Screening Saves Lives Reauthorization Act of 2021 and its alignment with the mission and vision of One Heart Health.
According to the Centers for Disease Control and Prevention (CDC) (2022), over 1 million newborns are living with congenital heart disease (CHDs), with 40,000 born each year, and 1 in 4 needing surgery or other treatment within the first year of their life. The average US hospital cost for critical CHD holds the highest rates for congenital disabilities at a mean rate of $79,011 and a median rate of $29,886 (CDC, 2022). However, this cost does not include out-of-pocket expenses, caregiver costs, the costs to social and work life, or mental and emotional costs to a parent with a newborn diagnosed with CHD.
Unfortunately, underserved areas in the US and abroad do not have access to physicians or routine health services. 9 out of 10 children with CHD are born in low-resourced communities. Identification and treatment of CHD remains challenging in these low-resourced settings due to an overall shortage of medical technology and trained medical professionals. Consequences for undiagnosed and untreated CHD in newborns result in a 40% increase in special healthcare needs, such as medication management, physical and speech therapy, and services for developmental and behavioral conditions (CDC, 2022).
To prevent complications and consequences created by late diagnosis of CHD, the US government recently passed the Newborn Screening Saves Lives Reauthorization Act of 2021. This bill provides funding for comprehensive newborn screening and health services for a variety of medical disorders that are detrimental to a child’s health, such as CHD. This reauthorization act funds various services focused on the early detection of conditions, distribution of appropriate diagnostic and treatment services, disease health education for families, and quality improvement through tracking services. This bill has brought awareness to the importance of early detection of disorders in newborns for parents and across medical, political, and public health communities. Additionally, the reauthorization act addresses the need for updated, speedy, and reliable technology that brings diagnostic and educational services to communities and families. The bolstering of health screening programs through this bill has resulted in over 12,000 newborns being screened each year, facilitating timely treatment of a diagnosed disorder and thus improving the quality and length of the newborn’s life (Collins, 2022).
This reauthorization act reinforces and validates the mission and vision of One Heart Health. Since 2017, OHH has focused on developing cost-effective, readily available medical technologies to enable early diagnosis of CHD in newborns, infants, and children who live in low-resource areas of the world, thereby improving health outcomes. One Heart Health works to bridge the gap between detecting CHD and providing appropriate health services. The One Heart app works with a digital stethoscope to record heart sounds via a smartphone, which then sends the file to a trained cardiologist living anywhere in the world, who can analyze the heart sounds for abnormalities. Children who show signs of CHD can be diagnosed early, reducing mortality and improving their quality of life.
OHH has created the Chao Heart Alert algorithm to provide a real-time diagnosis of CHD, enhancing the mobile app’s speed, accuracy, and reliability in diagnosing CHD in underserved areas. Through the mobile app, utilization of the Chao Heart Alert algorithm, and partnerships with committed organizations, over 26,000 children in underserved areas within China have received CHD screenings; 51 children were determined to have CHD, where 20 children underwent surgery to correct the health issue.
In support of the reauthorization act, OHH’s focus for the future is to gain FDA approval for its CHD screening app in an effort to bring CHD services to newborns in underserved areas of the US. Every child has the right to a healthy and happy life, and no child should be without life-saving tools and services; this is what OHH strives to accomplish.
References
Centers for Disease Control and Prevention. (2022, January 24). Data and statistics on congenital heart defects. Congenital Heart Defects (CHDs). Retrieved December 20, 2022, from https://www.cdc.gov/ncbddd/heartdefects/data.htm
Collins, Susan. (2022, November 14). Senator Collins Co-sponsors Bipartisan Legislation to Improve Health of Newborn Babies. Retrieved December 3, 2022, from https://www.collins.senate.gov/newsroom/senator-collins-co-sponsors-bipartisan-legislation-to-improve-health-of-newborn-babies
