Close the gap in pediatric genomic care

Health plans in the U.S. are increasingly acknowledging the value of genomic testing for pediatric care, leading to expanded policies and improved coverage. Despite these advancements, access to timely genomic testing for children with suspected rare diseases remains inconsistent and often difficult to obtain. A 2025 analysis indicates that over 92% of commercially insured individuals in the U.S. have policies covering exome sequencing, with genome sequencing coverage also growing. However, the criteria for approving these tests are frequently restrictive, creating significant barriers for families. For instance, coverage may depend on the age of symptom onset, with arbitrary thresholds determining eligibility. Some insurance providers mandate that tests be ordered only by medical geneticists, a requirement that conflicts with American Academy of Pediatrics (AAP) guidelines and hinders general pediatricians who are increasingly expected to order these tests. Additionally, certain payers insist on a series of preliminary genetic tests before authorizing exome or genome sequencing, an approach that contradicts guidance from both the AAP and the American College of Medical Genetics and Genomics (ACMG). This friction between coverage policies and practical implementation leaves many families struggling to access the genomic care their children need.