I 
117TH CONGRESS 
1ST SESSION H. R. 5989 
To require the Secretary of Health and Human Services to conduct a dem-
onstration program to genetic and genomic testing for certain children, 
to provide for a study by the National Academy of Medicine on the 
use of such testing to improve health care, and for other purposes. 
IN THE HOUSE OF REPRESENTATIVES 
NOVEMBER 16, 2021 
Mr. SWALWELL (for himself, Mr. PETERS, and Mr. EMMER) introduced the 
following bill; which was referred to the Committee on Energy and Com-
merce, and in addition to the Committee on Ways and Means, for a pe-
riod to be subsequently determined by the Speaker, in each case for con-
sideration of such provisions as fall within the jurisdiction of the com-
mittee concerned 
A BILL 
To require the Secretary of Health and Human Services 
to conduct a demonstration program to genetic and 
genomic testing for certain children, to provide for a 
study by the National Academy of Medicine on the use 
of such testing to improve health care, and for other 
purposes. 
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled, 
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SECTION 1. SHORT TITLE. 
This Act may be cited as the ‘‘Precision Medicine An-
swers for Kids Today Act’’. 
SEC. 2. CENTERS FOR MEDICARE & MEDICAID SERVICES 
GUIDANCE ON THE EARLY AND PERIODIC 
SCREENING, DIAGNOSTIC, AND TREATMENT 
BENEFIT. 
Not later than 6 months after the date of enactment 
of this Act, the Centers for Medicare & Medicaid Services 
shall issue guidance to States on authority and require-
ments under the Medicaid program under title XIX of the 
Social Security Act to provide medically necessary health 
care that falls within the scope of services specified under 
section 1905(r) of the Social Security Act (42 U.S.C. 
1396d(r)) to a child, regardless of whether the service is 
available for adults under the State plan (or waiver of 
such plan) under such title. The guidance shall— 
(1) include technical and educational assistance 
on how to increase the frequency of coverage under 
the State plan (or waiver) pursuant to paragraphs 
(4) and (16) of section 1905(a) of such Act (42 
U.S.C. 1396d(a)) for genetic and genomic testing di-
agnostic services, including whole exome sequencing, 
whole genome sequencing, and gene panels when rec-
ommended by a qualified treating provider as a first- 
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or second-tier test for pediatric patients, including 
those who— 
(A) have a positive result from a newborn 
screening program; 
(B) have one or more neurodevelopmental 
or congenital anomalies; 
(C) are experiencing developmental delay 
or intellectual disability; 
(D) are having seizures; 
(E) have been referred or admitted to a 
pediatric or neonatal intensive care unit for a 
chronic or undiagnosed disease; 
(F) have been seen by at least one medical 
specialist for such chronic or undiagnosed dis-
ease; or 
(G) are suspected by at least one 
healthcare provider to have a neonatal- or pedi-
atric-onset genetic disease; 
(2) provide education and support to providers 
to minimize denials of claims for medical assistance 
under the State plan under title XIX of the Social 
Security Act resulting from deficient or inadequate 
paperwork; and 
(3) ensure that providers and Medicaid-eligible 
children and the families are aware of the Early and 
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Periodic Screening, Diagnostic and Treatment Ben-
efit under title XIX of the Social Security Act and 
have access to required screenings and necessary 
treatment services. 
SEC. 3. DEMONSTRATION PROGRAM TO PROVIDE GENETIC 
AND GENOMIC TESTING FOR CERTAIN CHIL-
DREN. 
(a) IN GENERAL.—The Secretary of Health and 
Human Services shall enter into agreements with up to 
15 States submitting applications under subsection (c) for 
the purpose of conducting, in accordance with this section, 
3-year demonstration projects under section 1115 of the 
Social Security Act (42 U.S.C. 1315) in such States dur-
ing the 3-year period beginning on the first date of the 
first fiscal quarter than begins on or after the date of the 
enactment of this section to test and evaluate the provision 
of medical assistance under the State plans under title 
XIX of such Act (or waivers of such plans) to eligible indi-
viduals for purposes of providing such individuals with ge-
netic and genomic testing. 
(b) DEMONSTRATION PROJECT PAYMENT REQUIRE-
MENTS.—Under each demonstration project under this 
section conducted by a State, the following shall apply: 
(1) The State shall provide a health care pro-
vider (as defined by the State) with payments for 
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the provision of genetic and genomic testing to any 
eligible individual. Payments made to a health care 
provider for such services shall be treated as medical 
assistance for purposes of section 1903(a) of the So-
cial Security Act (42 U.S.C. 1396b(a)), except that 
the Federal medical assistance percentage applicable 
to such payments shall be equal to 100 percent. 
(2) The State shall specify the methodology the 
State will use for determining payment for the provi-
sion of genetic and genomic testing. Such method-
ology for determining payment shall be established 
consistent with section 1902(a)(30)(A) of such Act 
(42 U.S.C. 1396a(a)(30)(A)). 
(c) APPLICATIONS.— 
(1) IN GENERAL.—A State desiring to enter 
into an agreement under subsection (a) with the 
Secretary for conducting a demonstration project 
shall submit to the Secretary an application, in ac-
cordance with such form and manner, and applica-
tion priorities, as specified by the Secretary and that 
at a minimum includes the following: 
(A) An explanation of how and the extent 
to which genetic and genomic testing under the 
demonstration project of the State will provide 
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information and data on how such services im-
prove the diagnosis of eligible individuals. 
(B) An explanation of how and the extent 
to which coverage under the State plan (or 
waiver) pursuant to the demonstration project 
will increase the use of genetic and genomic 
testing that may increase the use of genetic and 
genomic testing that may improve clinical out-
comes for eligible individuals. 
(C) Procedures for referring any eligible 
individual who seeks or needs treatment in a 
hospital emergency department to a health care 
provider who is qualified (as determined by the 
State) to provide genetic and genomic testing. 
(D) An explanation of how genetic and 
genomic testing may improve health outcomes 
for all populations in the State, including— 
(i) individuals with a rare genetic dis-
ease, 
including 
a 
metabolic 
disease, 
neurologic disorders, or hereditary cancer 
testing in the presence of a suspected or 
confirmed cancer diagnosis; and 
(ii) special populations, including in-
fants and children who are critically ill 
(non-infectious and non-trauma) patients, 
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transplant patients, individuals with car-
diac disease, and individuals with, or who 
have a family history of, a birth defect or 
developmental disability. 
(2) PREFERENCES IN CONSIDERING APPLICA-
TIONS.—In considering applications submitted under 
paragraph (1), the Secretary of Health and Human 
Services shall give preference to States that can 
demonstrate underutilization of genetic and genomic 
sequencing clinical services (with priority given to 
States that do not cover whole-genome sequencing or 
do not cover the majority of genetic and genomic 
clinical services) in pediatric populations under the 
State plan under title XIX of the Social Security Act 
(or waiver of such plan). 
(d) TECHNICAL
ASSISTANCE.—The Secretary of 
Health and Human Services shall provide technical assist-
ance to assist States in planning and designing the dem-
onstration project for purposes of applying for conducting 
such project under this section. 
(e) REPORTS BY STATES.—Not later than one year 
after the date on which a State enters into an agreement 
under subsection (a) with the Secretary for conducting a 
demonstration project, the State shall submit a report to 
the Administrator of the Centers for Medicare & Medicaid 
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Services and the Administrator of the Health Resources 
and Services Administration on the extent to which genetic 
and genomic testing improved outcomes and reduced 
health disparities. Such report shall include information 
on the number of patients receiving genetic and genomic 
testing, the types of services provided, and such other in-
formation as the Secretary shall prescribe. 
(f) REPORTS BY HEALTH CARE PROVIDERS.—As a 
condition for receiving payment for genetic and genomic 
testing provided to an eligible individual under a dem-
onstration project conducted by a State under this section, 
a health care provider shall report to the State, in accord-
ance with such requirements as the Secretary shall specify, 
on all applicable measures for determining the quality and 
efficacy of such services. 
(g) DEFINITIONS.—In this section: 
(1) ELIGIBLE INDIVIDUAL.—The term ‘‘eligible 
individual’’ means, with respect to a State, an indi-
vidual who— 
(A) is eligible for medical assistance under 
the State plan under title XIX of the Social Se-
curity Act (or a waiver of such plan); 
(B) is under the age of 21 (or, at the op-
tion of the State, under the age of 20, 19, or 
18 as the State may choose), or in the case of 
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an 
individual 
described 
in 
section 
1902(a)(10)(A)(i)(IX) of such Act (42 U.S.C. 
1396a(a)(10)(A)(i)(IX)), under the age of 26; 
(C) has been referred or admitted to an in-
tensive care unit, or has been seen by at least 
one medical specialist, for a suspected genetic 
or undiagnosed disease; or 
(D) is suspected by at least one medical 
specialist to have a neonatal-onset or pediatric- 
onset genetic disease. 
(2) GENETIC
AND
GENOMIC
TESTING.—The 
term ‘‘genetic and genomic testing’’, with respect to 
an eligible individual— 
(A) means the determination of a sequence 
of deoxyribonucleic acid bases in the genome of 
such individual, and, if for the sole benefit of 
the individual, a biological parent of such indi-
vidual for the purpose of determining whether 
one or more potentially disease-causing genetic 
variants are present in the genome of such indi-
vidual or such biological parent; and 
(B) includes— 
(i) the sequencing of the whole ge-
nome, the whole exome, or a panel of 
genes; and 
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(ii) any analysis, interpretation, and 
data report derived from such sequencing. 
SEC. 4. NATIONAL ACADEMY OF MEDICINE STUDY. 
(a) IN GENERAL.—Not later than one year after the 
date of the enactment of this Act, the Secretary of Health 
and Human Services shall enter into an arrangement with 
the National Academy of Medicine under which the Acad-
emy agrees to study— 
(1) how genetic and genomic testing may im-
prove preventative care and precision medicine; 
(2) disparities in access to precision diagnostics 
and associated therapeutics; 
(3) how genetic and genomic testing may be 
used to reduce health disparities in marginalized 
communities; 
(4) how the Federal Government may help to 
reduce barriers to genetic and genomic testing, in-
cluding— 
(A) encouraging the expansion of health 
insurance coverage of genetic and genomic test-
ing, including diagnostic, predictive, and pre-
symptomatic testing, and genetic and genomic 
testing (as defined in section 2(h)(2)); 
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(B) supporting the collection of evidence 
for the clinical utility and appropriate use of ge-
netic and genomic tests; and 
(C) improving access to genetic counselors, 
pathologists, and other relevant professions, in-
cluding strengthening related workforce edu-
cation and training efforts; 
(5)(A) the extent to which coverage provisions 
in the Medicare and Medicaid programs under titles 
XVIII and XIX of the Social Security Act (42 
U.S.C. 1395 et seq., 1396 et seq.) may restrain the 
use of genetic and genomic testing that may improve 
clinical outcomes for beneficiaries; 
(B) the extent to which coverage provided pur-
suant to section 2 increased the use of genetic and 
genomic testing and improved clinical outcomes for 
beneficiaries; and 
(C) how the Centers for Medicare & Medicaid 
Services may make coverage determinations that 
better suit a precision medicine approach to treat-
ment; and 
(6) how genetic and genomic testing may im-
prove health outcomes for all pediatric populations 
in the United States, including— 
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(A) children with a rare disease, including 
a metabolic disease, neurologic disorder, or he-
reditary cancer testing in the presence of a sus-
pected or confirmed cancer diagnosis; and 
(B) special populations, including— 
(i) critically ill (non-infectious and 
non-trauma) patients; 
(ii) transplant patients; 
(iii) individuals with cardiac disease; 
and 
(iv) individuals with, or who have a 
family history of, a birth defect or develop-
mental disability. 
(b) REPORT.— 
(1) IN GENERAL.—The arrangement under sub-
section (a) shall provide for the National Academy 
of Medicine to submit, not later than 2 years after 
the date of enactment of this Act, a report on the 
results of the study under subsection (a) to— 
(A) the Secretary of Health and Human 
Services; 
(B) the Committee on Ways and Means 
and the Committee on Energy and Commerce 
of the House of Representatives; and 
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(C) the Committee on Finance and the 
Committee on Health, Education, Labor, and 
Pensions of the Senate. 
(2) CONSULTATION.—The arrangement under 
subsection (a) shall provide for the National Acad-
emy of Medicine, in developing the report required 
by paragraph (1), to consult with physicians, other 
health professionals, health educators, health profes-
sional organizations, relevant companies, patients, 
patient organizations, the Health Resources and 
Services Administration, the National Cancer Insti-
tute, the National Institutes of Health, the Agency 
for Healthcare Research and Quality, and the Cen-
ters for Medicare & Medicaid Services. 
(3) USE
OF
INFORMATION.—The National 
Academy of Medicine shall, to the extent possible, in 
conducting the study under subsection (a), utilize in-
formation included in the reports submitted pursu-
ant to subsections (f) and (g) of section 2. 
SEC. 5. CENTERS FOR MEDICARE & MEDICAID SERVICES 
REPORT ON MEDICAID COVERAGE FOR GE-
NETIC AND GENOMIC TESTING. 
Not later than one year after the date of the enact-
ment of this Act, and annually thereafter for the subse-
quent 3 years, the Centers for Medicare & Medicaid Serv-
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