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Newborn Screening1 is done through a simple heel prick to get a blood sample followed by a lab analyzing the molecular weights of the newborn’s metabolites. The process is seemingly harmless to newborns, and can reduce disability progression and morbidity of serious diseases. As a resident of Texas, where life expectancy can be predicted from a person’s zip code, one can’t help but wonder if newborn screening provides equal outcomes for every baby screened. 2
Why is equality of outcomes important? Newborn screening is a public health program aimed at reducing overall disability and morbidity of certain early childhood diseases, which is thought to save money throughout the population on healthcare expenses. If the uninsured and underinsured are not able to appropriately treat diseases found in newborn screening, this public health policy would be increasing inequality in child healthcare. Healthcare equality is important because it lowers the healthcare expenses of citizens that rely on subsidized insurance, increases overall population health, and promotes equitable quality of life.
One problem faced by families after newborn screening is access to healthcare facilities.3 A newborn who is screened as likely to have a metabolic disease must undergo follow up examinations to actually diagnose them. In such a large state, access to specialty doctors varies greatly. Rural areas struggle to provide families with appropriate follow up care for diagnosis and proper facilities to provide treatment after diagnosis. Rural areas also have a harder time submitting samples due to their distance from testing sites in cities, meaning rural families may get results later than urban families. Rural pharmacies will take longer to get uncommon prescriptions or special formulas, or families may have to travel to a pharmacy which carries what they need.
Another barrier to healthcare equality for newborn screening lies in the educational materials offered to families.4 Healthcare providers are not always aware of the education materials provided by the health department, and thus may not offer them to families who are confused at the process. The educational materials are offered in English and Spanish, so families who do not know how to read one of these languages will require help with the materials. Doctors may hand the families the reading material instead of sitting down and talking with them. This would also affect parents who struggle with literacy. The educational materials are close to high-school level readings, which many people have not achieved.
The barriers discussed apply to all areas of healthcare, not just newborn screening. In order for NBS and other healthcare initiatives to reach their full potential, there must be an organized effort to reduce barriers in healthcare equality.
1. Texas Administrative Code §37.51 requires all babies born in Texas participate in Newborn Screening, with a religious exemption.