Genomic Answers for Children’s Health Act of 2026 | ChamberLight
Bills · HR 7118
IN COMMITTEE· 119TH CONGRESS
House BillHR 7118Health
Genomic Answers for Children’s Health Act of 2026
INTRO JAN 15· LAST ACTION JAN 15
READING
5MIN
COSPONSORS
24BIPARTISAN
READER REACTIONS0 TOTAL
NO VOTES YET · BE THE FIRST
Introduced only
LEGISLATIVE PROGRESS
STEP 2 / 8
Introduced
In Committee
Reported
Passed House
Passed Senate
Conference
To President
Became Law
WHAT THE BILL DOES
AI-written
This bill matters because it could significantly improve the diagnosis and treatment for thousands of children with rare or complex conditions. Many families currently face a long and frustrating journey, often called a 'diagnostic odyssey,' to figure out what's wrong with their child, sometimes waiting years for a diagnosis or never getting one. Whole genome and exome sequencing can provide answers much faster, leading to earlier and more appropriate treatments, which can improve health outcomes and quality of life.
Without this bill, coverage for these tests under Medicaid can be inconsistent, leading to denials, delays, and financial burdens for families. By clarifying and mandating coverage, the bill aims to remove these barriers, ensuring that all Medicaid-eligible children with suspected genetic conditions have equitable access to cutting-edge diagnostic tools. This could reduce unnecessary tests, specialists' visits, and hospital stays in the long run, potentially saving money for families and the healthcare system, while providing crucial information for personalized care.
KEY PROVISIONS
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PROVISION 01
Medicaid must cover whole genome and whole exome sequencing for children suspected of having a genetic disorder, rare disease, or a health condition of unknown origin, when ordered by a doctor as a first-tier test.
This ensures that advanced genetic testing is accessible to children on Medicaid who are most in need of a diagnosis.
PROVISION 02
The bill defines what whole genome and whole exome sequencing entails, including analysis, interpretation, and data reporting, and clarifies that testing a first-degree relative may also be covered.
This provides a clear and consistent understanding of what tests and related services are covered under the new mandate.
PROVISION 03
Payments for these genetic sequencing tests must be made separately and cannot be bundled with other medical services.
This ensures that the specific costs of these high-value diagnostic tests are recognized and paid for independently.
PROVISION 04
The Secretary of Health and Human Services (HHS) must conduct outreach and education efforts to promote awareness and access to these sequencing services, identifying best practices and challenges.
This provision aims to ensure that healthcare providers and patient families are informed about the new coverage and can effectively use it.
PROVISION 05
The Government Accountability Office (GAO) must report within two years on the implementation of the new coverage, assessing access barriers, changes in care, and impacts of issues like prior authorization and genetic counselor workforce challenges.
This provides critical oversight to ensure the new coverage is working as intended and identifies areas for future improvement.
This bill matters because it could significantly improve the diagnosis and treatment for thousands of children with rare or complex conditions. Many families currently face a long and frustrating journey, often called a 'diagnostic odyssey,' to figure out what's wrong with their child, sometimes waiting years for a diagnosis or never getting one. Whole genome and exome sequencing can provide answers much faster, leading to earlier and more appropriate treatments, which can improve health outcomes and quality of life.
Without this bill, coverage for these tests under Medicaid can be inconsistent, leading to denials, delays, and financial burdens for families. By clarifying and mandating coverage, the bill aims to remove these barriers, ensuring that all Medicaid-eligible children with suspected genetic conditions have equitable access to cutting-edge diagnostic tools. This could reduce unnecessary tests, specialists' visits, and hospital stays in the long run, potentially saving money for families and the healthcare system, while providing crucial information for personalized care.
KEY PROVISIONS
AI-extracted
high
Medicaid must cover whole genome and whole exome sequencing for children suspected of having a genetic disorder, rare disease, or a health condition of unknown origin, when ordered by a doctor as a first-tier test.
This ensures that advanced genetic testing is accessible to children on Medicaid who are most in need of a diagnosis.
med
The bill defines what whole genome and whole exome sequencing entails, including analysis, interpretation, and data reporting, and clarifies that testing a first-degree relative may also be covered.
This provides a clear and consistent understanding of what tests and related services are covered under the new mandate.
med
Payments for these genetic sequencing tests must be made separately and cannot be bundled with other medical services.
This ensures that the specific costs of these high-value diagnostic tests are recognized and paid for independently.
med
The Secretary of Health and Human Services (HHS) must conduct outreach and education efforts to promote awareness and access to these sequencing services, identifying best practices and challenges.
This provision aims to ensure that healthcare providers and patient families are informed about the new coverage and can effectively use it.
high
The Government Accountability Office (GAO) must report within two years on the implementation of the new coverage, assessing access barriers, changes in care, and impacts of issues like prior authorization and genetic counselor workforce challenges.
This provides critical oversight to ensure the new coverage is working as intended and identifies areas for future improvement.
Not later than 2 years after the date of enactment
Secretary of Health and Human Services (HHS) to publish a report on payment amounts, usage, and health outcomes related to sequencing
Not later than 2 years after the date of enactment
Comptroller General of the United States to collect feedback and assess implementation of the amendments
GLOSSARY
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Whole Genome Sequencing (WGS)
A comprehensive genetic test that determines the complete DNA sequence of an individual's entire set of genes (genome) to identify genetic variations that may cause disease.
Whole Exome Sequencing (WES)
A genetic test that focuses on sequencing only the protein-coding regions of an individual's genome (the exome), which are thought to contain most disease-causing mutations.
Medicaid
A joint federal and state program that provides healthcare coverage to low-income adults, children, pregnant women, elderly adults, and people with disabilities.
Genetic Disorder
A health problem caused by abnormalities in an individual's DNA, often inherited from parents, such as cystic fibrosis or Down syndrome.
Rare Disease
A disease that affects a small percentage of the population; in the U.S., it's generally defined as a condition affecting fewer than 200,000 people.
Congenital Anomalies
Also known as birth defects, these are structural or functional abnormalities that occur during fetal development and are present at birth.
Global Developmental Delay
ACTION TIMELINE
2 EVENTS
JAN 15
Introduced in House
INTROREFERRAL
JAN 15
Referred to the House Committee on Energy and Commerce.
A significant delay in two or more developmental areas (like motor skills, language, or problem-solving) in a child under the age of five.
Intellectual Disability
A condition characterized by significant limitations in both intellectual functioning (such as reasoning, learning, and problem-solving) and adaptive behavior (everyday social and practical skills).