Coverage gaps exist for molecular testing of children’s cancers | ASCO 2026

Reimbursement policies for molecular diagnostics have failed to keep up with the evidence base, especially in the area of bone cancers, says Katherine Janeway, M.D., senior physician at Dana-Farber/Boston Children's Cancer and Blood Disorders Center and director of Clinical Genomics at Dana-Farber Cancer Institute.

Clinical guidelines developed by the National Comprehensive Cancer Network (NCCN) for pediatric cancers are only beginning to be published, and many pediatric cancers don’t have a guideline for the genomic testing. The problem is especially acute for bone cancers. Current NCCN guidelines recommend genomic testing to identify mutations, copy number variations, and fusions in pediatric central nervous system cancer, leukemia and soft tissue sarcomas.

Currently, research protocols are the only reliable pathway to get testing done for bone cancers. “We’re not in a place where we have clear guidelines that insurance companies can refer to,” Janeway, a specialist in bone sarcomas, said in an interview ahead of the American Society of Clinical Oncologist annual meeting in Chicago.

But uncertainty about coverage also exists for adults covered by Medicare. CMS implemented a National Coverage Determination for genetic testing using next-generation sequencing (NGS) in March 2018 and amended it in January 2020. A 2025 cohort study published in JAMA Network Open found that 23.3% of cancer-related NGS claims among Medicare enrollees were denied between 2016 and 2021.

Janeway is speaking during a session about the progress for new biomarkers and treatments targeting molecular alterations specific to pediatric cancers.