I 
116TH CONGRESS 
1ST SESSION H. R. 4144 
To enable States to better provide access to whole genome sequencing clinical 
services for certain undiagnosed children under the Medicaid program, 
and for other purposes. 
IN THE HOUSE OF REPRESENTATIVES 
AUGUST 2, 2019 
Mr. PETERS (for himself, Mr. SHIMKUS, and Mr. VARGAS) introduced the 
following bill; which was referred to the Committee on Energy and Commerce 
A BILL 
To enable States to better provide access to whole genome 
sequencing clinical services for certain undiagnosed chil-
dren under the Medicaid program, and for other pur-
poses. 
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled, 
SECTION 1. SHORT TITLE. 
This Act may be cited as the ‘‘Ending the Diagnostic 
Odyssey Act of 2019’’. 
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SEC. 2. STATE OPTION TO PROVIDE WHOLE GENOME SE-
QUENCING CLINICAL SERVICES FOR CER-
TAIN CHILDREN. 
Title XIX of the Social Security Act (42 U.S.C. 1396 
et seq.) is amended by inserting after section 1943 the 
following new section: 
‘‘SEC. 1944. STATE OPTION TO PROVIDE WHOLE GENOME 
SEQUENCING CLINICAL SERVICES FOR CER-
TAIN CHILDREN. 
‘‘(a) 
IN
GENERAL.—Notwithstanding 
section 
1902(a)(1) 
(relating 
to 
statewideness), 
section 
1902(a)(10)(B) (relating to comparability), and any other 
provision of this title for which the Secretary determines 
it is necessary to waive in order to implement this section, 
beginning January 1, 2020, a State, at its option as a 
State plan amendment, may provide for medical assistance 
under this title to an eligible individual for purposes of 
providing the individual with whole genome sequencing 
clinical services. 
‘‘(b) PAYMENTS.— 
‘‘(1) IN
GENERAL.—A State shall provide a 
health care provider (as defined by the State) with 
payments for the provision of whole genome sequenc-
ing clinical services to any eligible individual. Pay-
ments made to a health care provider for such serv-
ices shall be treated as medical assistance for pur-
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poses of section 1903(a), except that, during the 
first 12 fiscal year quarters that the State plan 
amendment is in effect, the Federal medical assist-
ance percentage applicable to such payments shall be 
equal to 75 percent. 
‘‘(2) METHODOLOGY.—The State shall specify 
in the State plan amendment the methodology the 
State will use for determining payment for the provi-
sion of whole genome sequencing clinical services. 
Such methodology for determining payment shall be 
established consistent with section 1902(a)(30)(A). 
‘‘(3) PLANNING GRANTS.— 
‘‘(A) IN GENERAL.—Beginning January 1, 
2020, the Secretary may award planning grants 
to States for purposes of developing a State 
plan amendment under this section. A planning 
grant awarded to a State under this paragraph 
shall remain available until expended. 
‘‘(B) STATE
CONTRIBUTION.—A State 
awarded a planning grant shall contribute an 
amount equal to the State percentage deter-
mined under section 1905(b) for each fiscal 
year for which the grant is awarded. 
‘‘(c) HOSPITAL REFERRALS.—A State shall include 
in the State plan amendment a requirement for any hos-
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pital that is a participating provider under the State plan 
(or a waiver of such plan) to establish procedures for re-
ferring any eligible individual who seeks or needs treat-
ment in a hospital emergency department to a health care 
provider who is qualified (as determined by the State) to 
provide whole genome sequencing clinical services. 
‘‘(d) REPORTS BY STATES.—Not later than 3 years 
after the date on which the State plan amendment under 
this section is approved, a State shall submit a report to 
the Administrator of the Centers for Medicare & Medicaid 
Services and the Administrator of the Health Resources 
and Services Administration on— 
‘‘(1) the extent to which whole genomic se-
quencing clinical services reduce health disparities; 
and 
‘‘(2) the extent to which coverage under the 
State plan (or a waiver of such plan) impedes the 
use of genetic and genomic testing that may improve 
clinical outcomes for eligible individuals enrolled in 
the State plan (or under a waiver of such plan). 
‘‘(e) REPORTS BY HEALTH CARE PROVIDERS.—As a 
condition for receiving payment for whole genome sequenc-
ing clinical services provided to an eligible individual, a 
health care provider shall report to the State, in accord-
ance with such requirements as the Secretary shall specify, 
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on all applicable measures for determining the quality of 
such services. 
‘‘(f) DEFINITIONS.—In this section: 
‘‘(1) ELIGIBLE INDIVIDUAL.—The term ‘eligible 
individual’ means an individual— 
‘‘(A) who is eligible for medical assistance 
under the State plan (or a waiver of such plan); 
‘‘(B) who is under the age of 21 (or, at the 
option of the State, under the age of 20, 19, or 
18 as the State may choose), or in the case of 
an 
individual 
described 
in 
section 
1902(a)(10)(A)(i)(IX), under the age of 26; 
and 
‘‘(C) who— 
‘‘(i) has been referred or admitted to 
an intensive care unit, or has been seen by 
at least one medical specialist, for a sus-
pected genetic or undiagnosed disease; or 
‘‘(ii) is suspected by at least one med-
ical specialist to have a neonatal- or pedi-
atric-onset genetic disease. 
‘‘(2) WHOLE GENOME SEQUENCING CLINICAL 
SERVICES.—The term ‘whole genome sequencing 
clinical services’, with respect to an eligible indi-
vidual— 
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‘‘(A) means the unbiased sequencing of all 
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 any analysis, interpretation, 
and data report derived from such sequenc-
ing.’’. 
Æ 
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