[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[H.R. 7118 Introduced in House (IH)]
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119th CONGRESS
2d Session
H. R. 7118
To amend title XIX of the Social Security Act to clarify that whole
genome and whole exome sequencing for children with certain medical
needs is covered under the Medicaid program.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
January 15, 2026
Mr. Peters (for himself, Mr. Bilirakis, Mr. Veasey, Mr. Balderson, Mr.
Mullin, Mr. Carey, Ms. Houlahan, and Ms. Salazar) introduced the
following bill; which was referred to the Committee on Energy and
Commerce
_______________________________________________________________________
A BILL
To amend title XIX of the Social Security Act to clarify that whole
genome and whole exome sequencing for children with certain medical
needs is covered under the Medicaid program.
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Genomic Answers for Children's
Health Act of 2026''.
SEC. 2. CLARIFYING THAT WHOLE GENOME AND WHOLE EXOME SEQUENCING FOR
CHILDREN WITH CERTAIN MEDICAL NEEDS IS COVERED UNDER THE
MEDICAID PROGRAM.
(a) In General.--Section 1905 of the Social Security Act (42 U.S.C.
1396d) is amended--
(1) in subsection (r)--
(A) by redesignating paragraph (5) as paragraph
(6); and
(B) by inserting after paragraph (4) the following
new paragraph:
``(5) Whole genome sequencing and whole exome sequencing
(as defined in subsection (kk)), whether furnished in the
inpatient or outpatient setting, if ordered by a physician or
other provider acting within the provider's scope of practice
under State law as a first-tier test for an individual
suspected to have a genetic disorder, rare disease, or a health
condition of unknown origin, including 1 or more congenital
anomalies, a global developmental delay, or an intellectual
disability.''; and
(2) by adding at the end the following new subsection:
``(kk) Whole Genome Sequencing and Whole Exome Sequencing.--For
purposes of subsection (r)(5), the term `whole genome sequencing and
whole exome sequencing'--
``(1) means the determination of a sequence of
deoxyribonucleic acid bases in the genome taken or derived from
an individual, and, if for the primary benefit of the
individual's diagnosis or treatment, a first degree biological
relative or relatives of such individual for the purpose of
determining whether 1 or more potentially disease-causing
genetic variants are present in the genome of such individual
or such biological first-degree relative; and
``(2) includes--
``(A) the sequencing of the whole genome or the
whole exome; and
``(B) any analysis, interpretation, and data report
derived from such sequencing.''.
(b) Additional Updates.--Section 1902(a) of the Social Security Act
(42 U.S.C. 1396a(a)) is amended--
(1) in paragraph (88), by striking ``and'' at the end;
(2) in paragraph (89), by striking the period and inserting
``; and''; and
(3) by inserting after paragraph (89) the following new
paragraph:
``(90) provide that payment for whole genome sequencing and
whole exome sequencing (as defined in section 1905(kk)) is made
separately and is not bundled as part of payment for any other
medical assistance.''.
(c) Outreach and Education.--For purposes of promoting awareness of
and access to whole genome and exome sequencing under section 1905(r)
of the Social Security Act (42 U.S.C. 1396d(r)), the Secretary of
Health and Human Services shall--
(1) convene national organizations (including at least
those organizations representing pediatricians, specialists in
pediatric rare diseases, children's hospitals, geneticists,
genetic counselors, laboratory test developers), States,
hospitals and health systems, individuals with rare diseases,
and those national organizations representing Medicaid managed
care organizations to identify challenges and opportunities in
implementation of the amendments made by this section,
including potential best practices that minimize denials of
claims for medical assistance under the State plan under title
XIX of such Act resulting from use of prior authorization or
administrative requirements;
(2) conduct outreach to national organizations (including
at least those organizations representing hospitals, health
systems, children's hospitals, pediatricians, and geneticists),
States, national organizations representing Medicaid managed
care oganizations, national organizations representing rare
disease patients and families, and national organizations
representing Medicaid-eligible children and their families to
ensure they are aware of the early and periodic screening,
diagnostic, and treatment services benefit under title XIX of
such Act and can benefit from access to required screenings and
necessary treatment services; and
(3) not later than 2 years after the date of the enactment
of this Act, publish on the public website of the Department of
Health and Human Services a report that includes--
(A) payment amounts for whole genome sequencing and
whole exome sequencing under each State plan under
title XIX of such Act; and
(B) information relating to the number of children
receiving such sequencing under such State plans,
health outcomes, types of services provided as a result
of such sequencing, and other such relevant
information.
(d) Report.--Not later than 2 years after the date of the enactment
of this Act, the Comptroller General of the United States shall do the
following:
(1) Collect and analyze feedback regarding implementation
of the amendments made by this Act from the organizations and
entities described in paragraph (1) or (2) of subsection (b),
including--
(A) experiences in accessing whole genome
sequencing and whole exome sequencing and results
pursuant to such amendments, including any barriers to
such access;
(B) changes to care or services furnished after
such sequencing;
(C) identification of remaining challenges, if any,
related to access to such sequencing for individuals
eligible for early and periodic screening, diagnostic,
and treatment services under the Medicaid program; and
(D) health professional awareness of such
amendments.
(2) Assess the following for impacts on access to such
sequencing under such program for such individuals:
(A) Prior authorization, which may include
assessment of impacts related to delay of care and
uncertainty or surprise of payment.
(B) Workforce and reimbursement challenges for
genetic counselors.
(C) The extent to which market cost is aligned with
the Medicare clinical laboratory fee schedule and the
degree to which the Secretary of Health and Human
Services' adjustment of the fee schedule might more
accurately reflect market realities and support
affordability.
(3) Make recommendations to the Secretary of Health and
Human Services relating to additional guidance or improvements
that may be made based on the feedback collected under
paragraph (1) and the assessment described in paragraph (2).
(e) Effective Date.--The amendments made by this section shall
apply beginning January 1, 2027.
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