I 
115TH CONGRESS 
2D SESSION 
H. R. 5062 
To provide for a study by the National Academy of Medicine on the use 
of genetic and genomic testing to improve health care, and for other purposes. 
IN THE HOUSE OF REPRESENTATIVES 
FEBRUARY 15, 2018 
Mr. SWALWELL of California (for himself, Mr. SHIMKUS, Mr. PETERS, Mr. 
PAULSEN, and Mr. VARGAS) introduced the following bill; which was re-
ferred to the Committee on Energy and Commerce 
A BILL 
To provide for a study by the National Academy of Medicine 
on the use of genetic and genomic 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, 
SECTION 1. SHORT TITLE. 
This Act may be cited as the ‘‘Advancing Access to 
Precision Medicine Act’’. 
SEC. 2. NATIONAL ACADEMY OF MEDICINE STUDY. 
(a) IN GENERAL.—Not later than 60 days after the 
date of the enactment of this Act, the Secretary of Health 
and Human Services shall enter into an arrangement with 
VerDate Sep 11 2014 
21:55 Feb 26, 2018
Jkt 079200
PO 00000
Frm 00001
Fmt 6652
Sfmt 6201
E:\BILLS\H5062.IH
H5062
khammond on DSK30JT082PROD with BILLS
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) how genetic and genomic testing may re-
duce health disparities; 
(3) 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 whole genome se-
quencing; 
(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; 
(4)(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 
VerDate Sep 11 2014 
21:55 Feb 26, 2018
Jkt 079200
PO 00000
Frm 00002
Fmt 6652
Sfmt 6201
E:\BILLS\H5062.IH
H5062
khammond on DSK30JT082PROD with BILLS
use of genetic and genomic testing that may improve 
clinical outcomes for beneficiaries; and 
(B) how the Centers for Medicare & Medicaid 
Services may make coverage determinations that 
better suit a precision medicine approach to treat-
ment; and 
(5) how genetic and genomic testing may im-
prove health outcomes for all populations in the 
United States, including— 
(A) individuals with a rare disease, includ-
ing— 
(i) a metabolic disease; 
(ii) a hereditary cancer syndrome; and 
(iii) a neurologic disease with known 
treatments; and 
(B) special populations, including— 
(i) infants and children; 
(ii) critically ill (non-infectious and 
non-trauma) patients; 
(iii) transplant patients; 
(iv) individuals with cardiac disease; 
and 
(v) individuals with, or who have a 
family history of, a birth defect or develop-
mental disability. 
VerDate Sep 11 2014 
21:55 Feb 26, 2018
Jkt 079200
PO 00000
Frm 00003
Fmt 6652
Sfmt 6201
E:\BILLS\H5062.IH
H5062
khammond on DSK30JT082PROD with BILLS
(b) REPORT.— 
(1) IN GENERAL.—The arrangement under sub-
section (a) shall provide for the National Academy 
of Medicine to submit, not later than 3 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 
(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. 
VerDate Sep 11 2014 
21:55 Feb 26, 2018
Jkt 079200
PO 00000
Frm 00004
Fmt 6652
Sfmt 6201
E:\BILLS\H5062.IH
H5062
khammond on DSK30JT082PROD with BILLS
SEC. 3. 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, 2019, 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-
VerDate Sep 11 2014 
21:55 Feb 26, 2018
Jkt 079200
PO 00000
Frm 00005
Fmt 6652
Sfmt 6201
E:\BILLS\H5062.IH
H5062
khammond on DSK30JT082PROD with BILLS
poses of section 1903(a), except that, during the 
first 8 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, 
2019, 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-
VerDate Sep 11 2014 
21:55 Feb 26, 2018
Jkt 079200
PO 00000
Frm 00006
Fmt 6652
Sfmt 6201
E:\BILLS\H5062.IH
H5062
khammond on DSK30JT082PROD with BILLS
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 three 
years after the date on which the State plan amendment 
under this section is approved, a State shall submit a re-
port 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, 
VerDate Sep 11 2014 
21:55 Feb 26, 2018
Jkt 079200
PO 00000
Frm 00007
Fmt 6652
Sfmt 6201
E:\BILLS\H5062.IH
H5062
khammond on DSK30JT082PROD with BILLS
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 who— 
‘‘(A) is eligible for medical assistance 
under the State plan (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 
an 
individual 
described 
in 
section 
1902(a)(10)(A)(i)(IX), under the age of 26; 
‘‘(C) has been referred or admitted to a 
pediatric intensive care unit for a chronic or 
undiagnosed disease; 
‘‘(D) has been seen by at least one medical 
specialist for such chronic or undiagnosed dis-
ease; and 
‘‘(E) is suspected by at least one medical 
specialist to have a pediatric-onset genetic dis-
ease. 
‘‘(2) WHOLE GENOME SEQUENCING CLINICAL 
SERVICES.—The term ‘whole genome sequencing 
clinical services’, with respect to an eligible indi-
vidual— 
VerDate Sep 11 2014 
21:55 Feb 26, 2018
Jkt 079200
PO 00000
Frm 00008
Fmt 6652
Sfmt 6201
E:\BILLS\H5062.IH
H5062
khammond on DSK30JT082PROD with BILLS
‘‘(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 
VerDate Sep 11 2014 
21:55 Feb 26, 2018
Jkt 079200
PO 00000
Frm 00009
Fmt 6652
Sfmt 6301
E:\BILLS\H5062.IH
H5062
khammond on DSK30JT082PROD with BILLS