New Bill Seeks to Unlock Genomic Answers for Children on Medicaid

HOUSTON, TX – January 16, 2026 – A landmark bipartisan bill introduced in the House of Representatives aims to end the painful “diagnostic odyssey” for millions of children by ensuring Medicaid covers advanced genomic sequencing. The Genomic Answers for Children’s Health Act, if passed, would clarify federal law to provide consistent access to life-changing genetic tests for children with rare and undiagnosed diseases, a move supported by a broad coalition of hospitals, patient advocates, and diagnostic leaders like Baylor Genetics.

For countless families, the journey to understanding a child's complex medical condition is a grueling marathon of specialist visits, invasive tests, and devastating uncertainty. This new legislation seeks to replace that marathon with a sprint, providing a direct path to the precise answers that only genomic sequencing can offer.

Ending the ‘Diagnostic Odyssey’ for America's Children

Children with rare genetic diseases often wait months or even years for an accurate diagnosis. This delay not only postpones critical, sometimes life-saving, treatment but also inflicts immense emotional and financial strain on their families. The problem is particularly acute for those covered by Medicaid, the largest payer for children with rare diseases in the U.S. Currently, a child’s access to genomic sequencing—a powerful tool that can scan their entire genetic code for clues—often depends more on their zip code than their medical need.

Medicaid coverage for these advanced tests varies dramatically from state to state. While some states have embraced the technology, others have restrictive policies or lack clear guidance, creating a frustrating patchwork of access. The Genomic Answers for Children’s Health (GACH) Alliance, a group of 28 organizations advocating for the bill, highlights that this inconsistency forces many families into a state of limbo, cycling through incorrect diagnoses and ineffective treatments while their child’s condition may worsen.

“Based on my experience as a pediatric neurologist who cares for many children with neurogenetic disorders in my clinic, I have seen that the faster these children have answers about their neurogenetic conditions, the faster they can receive treatment, which is often lifechanging or lifesaving,” stated Dr. Peter B. Kang, Past President of the Child Neurology Society.

How the Bill Aims to Standardize Care

The Genomic Answers for Children’s Health Act tackles this disparity head-on by amending a key part of the Social Security Act. It clarifies that Medicaid’s Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit—a mandatory set of comprehensive services for beneficiaries under 21—includes whole genome and whole exome sequencing when recommended by a clinician for a child suspected of having a genetic disease.

By explicitly defining these tests as a covered service under the powerful EPSDT mandate, the bill would effectively eliminate state-level ambiguity and create a national standard for access. The legislation also covers sequencing for first-degree relatives, which is often essential for accurately interpreting a child’s results and identifying the disease-causing variant.

A critical, and often overlooked, component of the bill addresses care for the most vulnerable patients: those hospitalized in intensive care units. It would require state Medicaid programs to establish a separate “add-on” payment for inpatient sequencing services. This provision ensures that hospitals are adequately reimbursed for providing rapid tests, such as the five-day Rapid Whole Genome Sequencing (rWGS) offered by labs like Baylor Genetics, which can be crucial for guiding immediate medical decisions in critically ill newborns and children.

Aligning Policy with Modern Medical Practice

The legislation is not proposing a radical new approach but rather seeks to align public health policy with established clinical best practices. Leading medical organizations, including The American College of Medical Genetics and Genomics (ACMG), The National Society of Genetic Counselors (NSGC), and the American Academy of Pediatrics (AAP), have all issued updated guidance recommending genome and exome sequencing as a first-tier diagnostic tool for children with certain complex medical presentations, such as congenital anomalies or developmental delays.

These guidelines are based on mounting evidence that early, comprehensive sequencing provides a higher diagnostic yield than traditional, sequential testing methods. It can shorten the path to diagnosis, prevent unnecessary and costly procedures, and enable clinicians to prescribe targeted therapies or connect families with vital support services.

“Children with rare and undiagnosed diseases often wait months or years for a diagnosis, delaying treatment and adding emotional and financial strain for families,” said Kengo Takishima, Chairman and CEO of Baylor Genetics, in a statement announcing the company's support for the bill. “We support this legislation as a vital step in ensuring all children can benefit from life-changing genomic insights.”

A Coalition for Change and Proven Success

The push for the Genomic Answers for Children’s Health Act is bolstered by compelling real-world data. The legislation was partly inspired by the success of “Project Baby Bear,” a California-based pilot program that provided rapid whole genome sequencing to critically ill infants. The study demonstrated that early diagnosis not only saved lives but also significantly reduced long-term healthcare costs by avoiding prolonged hospital stays and redundant testing.

The success of Project Baby Bear has spurred similar initiatives in other states, including Project Baby Manatee in Florida and Project Baby Deer in Michigan, further proving the clinical and economic case for early genomic diagnosis. The bill aims to take these successful state-level models and make their benefits available to eligible children nationwide.

The GACH Alliance, which includes prominent children’s hospitals, research institutions, and patient advocacy groups, has been instrumental in shaping and promoting the legislation. By uniting a diverse range of stakeholders, the alliance has built a powerful consensus around the urgent need to modernize Medicaid policy to reflect the transformative potential of genomic medicine. The bipartisan group of lawmakers who introduced the bill reflects this broad support, signaling a shared commitment to leveraging scientific advancement for the well-being of all children, regardless of their family's income or home state.