Prevention and Treatment to Improve Maternal, Infant, and Child Health
March of Dimes believes all newborn should be screened at birth for 31 genetic and metabolic conditions. The Texas Newborn Screening Program provides early identification and clinical care coordination for infants affected by certain genetic and metabolic conditions. By law, Texas is required to screen all newborns for all 31 disorders; to the extent funding is available. Currently, newborns are screened for all of the disorders except severe combined immunodeficiency (SCID) and Critical Congenital Heart Disease (CCHD). These disorders have no immediate visible effects on a baby, but unless they are detected and treated early, they can cause physical disabilities, intellectual disabilities and even death. According to the Centers for Disease Control and Prevention (CDC), the total lifetime costs for a child with an intellectual disability, a consequence of many of these disorders, is $1 million per child. Early detection and prevention improves survival rate of children born with these disorders, decreases the number of times they are hospitalized, improves their nutritional and cognitive functioning, and can save taxpayer’s dollars in the long term.
Severe Combined Immunodeficiency Disorder (SCID)
Children with SCID lack immune protection against bacteria, viruses, and fungi and are prone to repeated and persistent infections that would not cause serious illness in a person with a normal immune system. Unless treated early, a child will mostly likely die from opportunistic infections as an infant. SCID is caused by several different genetic defects, most of which are hereditary.
SCID became better known to the general public in the 1970s and 1980s after the pop culture movie, The Boy in the Plastic Bubble, starring John Travolta, documented the life of David Vetter of Houston, Texas.
On January 21, 2010, the federal Advisory Committee on Heritable Disorders for Newborns and Children (SAHDNC) recommended adding SCID as a ‘core’ condition for mandatory screening of all newborns in the United States. Five months later, on May 21, 2010 Kathleen Sebelius, Secretary of U.S. Department of Health and Human Services approved the addition of SCID to the then ‘core’ panel of 30 metabolic conditions as a part of her recommendation for a uniform screening panel as the national standard for newborn screening programs in the U.S.
When newborns are screened and diagnosed early with SCID, they benefit from early treatment and interventions. Treatment for SCID generally requires a bone marrow transplant. The value of screening to identify SCID early leads not only to improvements in outcomes, but also costs. Documented cases indicate that treatment for a single infant diagnosed with SCID prior to 3.5 months costs $50,000 while treatment costs after 3.5 months can cost up to $1 million or more. For instance, a child in North Carolina who was not screened for SCID as a newborn and is receiving treatment has already exceeded $2.2 million in medical costs.
March of Dimes is working with state lawmakers to secure funding to screen all newborns for SCID in Texas.
March of Dimes website
Texas Department of State Health Services Laboratory website
Texas Department of State Health Services Clinical Care Coordination website
National Newborn Screening and Genetics Resource Center website
American Academy of Pediatrics
American College of Medical Genetics