I 
117TH CONGRESS 
1ST SESSION H. R. 2754 
To authorize the Patient-Centered Outcomes Research Trust Fund to fund 
research of the symptoms of COVID–19, and for other purposes. 
IN THE HOUSE OF REPRESENTATIVES 
APRIL 22, 2021 
Mr. BEYER (for himself and Mr. BERGMAN) introduced the following bill; 
which was referred to the Committee on Energy and Commerce, and in 
addition to the Committee on Ways and Means, for a period to be subse-
quently determined by the Speaker, in each case for consideration of such 
provisions as fall within the jurisdiction of the committee concerned 
A BILL 
To authorize the Patient-Centered Outcomes Research Trust 
Fund to fund research of the symptoms of COVID– 
19, 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 ‘‘COVID–19 Long 
Haulers Act’’. 
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SEC. 2. AUTHORIZATION TO FUND RESEARCH OF THE 
LONG-TERM SYMPTOMS OF COVID–19 BY THE 
PATIENT-CENTERED OUTCOMES RESEARCH 
TRUST FUND. 
(a) IN GENERAL.—The Patient-Centered Outcomes 
Research Trust Fund under section 1181 of the Social Se-
curity Act (42 U.S.C. 1320e(b)) shall fund research de-
scribed in subsection (b). 
(b) RESEARCH DESCRIBED.—For purposes of sub-
section (a), research described in this subsection shall in-
clude— 
(1) prior to creating a patient registry described 
in paragraph (2), survey existing patient registries 
that include individuals experiencing post-acute 
sequelae of COVID–19 (in this section, referred to 
as ‘‘PASC’’); 
(2) creating a patient registry for those with 
COVID–19 with information that— 
(A) contains the— 
(i) symptoms that arise while an indi-
vidual is initially infected with COVID–19 
and that resolve over time; 
(ii) symptoms that arise while an indi-
vidual is initially infected with COVID–19 
and that extend beyond the resolution of 
initial symptoms; 
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(iii) symptoms that arise after an in-
dividual is initially infected with COVID– 
19 and that endure and that the clinician 
of such individual has reason to suspect 
were related to the COVID–19 diagnosis; 
(iv) symptoms that arise in an indi-
vidual that may be related to COVID–19 
but a diagnosis of COVID–19 was not ob-
tained and cannot be identified due to a 
lack of antibodies, false negative test re-
sults, or lack of access to timely testing; 
(v) treatments of individuals after pri-
mary diagnosis to COVID–19 and the ef-
fectiveness 
of 
such 
treatments 
disaggregated by age, gender, race or eth-
nicity, and co-morbidities and related post- 
viral illnesses overlapping with PASC; and 
(vi) any other relevant questions or 
issues related to individuals who experience 
a diagnosis of, treatment for, and manage-
ment of care with COVID–19, PASC, or 
related post-viral illnesses overlapping with 
PASC; and 
(B) synthesizes information relating to in-
dividuals experiencing post-acute sequelae of 
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COVID–19 identified from the survey described 
in paragraph (1) and information under the pa-
tient registry described in paragraph (2); and 
(3) outreach and inclusion (as appropriate) in-
dividuals from communities with PASC, traditional 
health 3 disparities and inequities and related post- 
viral illnesses overlapping with PASC. 
(c) REPORT.—Not later than 1 year after the estab-
lishment of the synthesized patient registry described in 
subsection (a)(2), and annually thereafter, the Patient- 
Centered Outcomes Research Institute shall submit data, 
findings, and information with respect to the status of the 
patient registry (including progress, barriers, and issues) 
to Congress and the President. 
(d) AUTHORIZATION OF APPROPRIATIONS.—There is 
hereby authorized $30,000,000 for fiscal year 2022 to 
carry out this section, which shall remain available until 
expended. 
SEC. 3. RESEARCH ON UNITED STATES HEALTH CARE SYS-
TEM’S RESPONSE TO LONG-TERM SYMPTOMS 
OF COVID–19. 
(a) IN GENERAL.—The Secretary of Health and 
Human Services, acting through the Director of the Agen-
cy for Healthcare Research and Quality, shall conduct or 
support research related to the United States health care 
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system’s response to long-term symptoms of COVID–19, 
including with respect to— 
(1) the expansion and efficacy of post-infectious 
disease treatment, including— 
(A) identifying obstacles to access for vet-
erans, the elderly, disabled, and low-income 
communities; 
(B) evaluating and identifying potential 
gaps or other weaknesses that bear on gender, 
geographic, racial and ethnic disparities on 
COVID–19 infection rates, severity and length 
of symptoms, and outcomes; 
(C) identifying gaps in compliance with 
health care privacy and security rules; and 
(D) evaluating whether diagnosis, access 
to, or treatment associated with medical pro-
viders and care delivered in different settings 
varied by gender, disability, geographic, racial 
and ethnic group; and 
(2) conducting and support rapid turnaround 
research to— 
(A) identify health care strategies that 
help mitigate gender, geographic, disability, ra-
cial and ethnic disparities in COVID–19 infec-
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tion rates, severity and length of symptoms, 
secondary illnesses, and outcomes; 
(B) identify health care-related factors 
contributing to such disparities in COVID–19 
infection rates, hospitalizations, severity and 
length of disease, secondary illnesses, and out-
comes; and 
(C) provide recommendations on ensuring 
equity in diagnosis and access to quality post- 
infectious treatments that may be advanced to 
mitigate such disparities, going forward. 
(b) PROTOCOLS
ON PASC PATIENTS.—The Sec-
retary of Health and Human Services, acting through the 
Director of the Agency for Healthcare Research and Qual-
ity, shall coordinate cross-agency engagement with leaders 
from communities with PASC, traditional health dispari-
ties and inequities and related post-viral illnesses overlap-
ping with PASC— 
(1) to develop protocols that ensure PASC pa-
tients have access to medical professionals educated 
about post-infectious disease and treatments; and 
(2) to provide guidance on PASC diagnostics, 
treatments, and care that takes into account gender, 
geographic, racial and ethnic disparities. 
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(c) AUTHORIZATION OF APPROPRIATIONS.—There is 
authorized to be appropriated to carry out this section 
$30,000,000 for fiscal year 2022 to carry out this section, 
which shall remain available until expended. 
SEC. 4. EDUCATION AND DISSEMINATION OF INFORMATION 
WITH RESPECT TO LONG-TERM SYMPTOMS 
OF COVID–19. 
(a) POST-ACUTE SEQUELAE OF COVID–19 (PASC) 
PUBLIC EDUCATION PROGRAM.—The Secretary of Health 
and Human Services, acting through the Director of the 
Centers for Disease Control and Prevention, shall develop 
and disseminate to the public information regarding 
PASC, including information on— 
(1) the awareness, incidence, and common 
symptoms of PASC among COVID–19 patients; 
(2) illnesses related and often comorbid with 
PASC, including but not limited to, 
(A) myalgic encephalomyelitis/chronic fa-
tigue syndrome (ME/CFS) and fibromyalgia 
(FM); 
(B) postural orthostatic tachycardia syn-
drome 
(POTS) 
and 
other 
forms 
of 
dysautonomia; 
(C) autoimmune diseases associated with 
viral triggers; 
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(D) connective tissue diseases exacerbated 
or triggered by infections; and 
(E) mast cell activation syndrome (MCAS); 
and 
(3) the availability, as medically appropriate, of 
treatment options for PASC and related post-viral 
illnesses overlapping with PASC, as identified in sec-
tion (2) above. 
(b) POST-ACUTE SEQUELAE OF COVID–19 (PASC) 
PROVIDER
EDUCATION
PROGRAM.—The Secretary of 
Health and Human Services, acting through the Director 
of the Centers for Disease Control and Prevention, shall 
in consultation with communities with PASC, traditional 
health disparities and inequities and related post-viral ill-
nesses overlapping with PASC, develop and disseminate 
to health care providers information on PASC for the pur-
pose of ensuring that health care providers remain in-
formed about current information on this emerging illness 
and related post-infectious illnesses, which have been 
shown to be closely related to PASC including information 
on— 
(1) myalgic encephalomyelitis/chronic fatigue 
syndrome (ME/CFS) and fibromyalgia (FM); 
(2) postural orthostatic tachycardia syndrome 
(POTS) and other forms of dysautonomia; 
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(3) autoimmune diseases associated with viral 
triggers; 
(4) connective tissue diseases exacerbated or 
triggered by infections; and 
(5) mast cell activation syndrome (MCAS). 
(c) DISSEMINATION
OF INFORMATION.—The Sec-
retary may disseminate information under subsection (a) 
and subsection (b) directly or through arrangements with 
intra-agency initiatives, nonprofit organizations, consumer 
groups, institutions of higher learning (as defined in sec-
tion 101 of the Higher Education Act of 1965 (20 U.S.C. 
1001)), or Federal, State, or local public private partner-
ships. 
(d) AUTHORIZATION OF APPROPRIATIONS.—There is 
authorized to be appropriated to carry out this section 
$30,000,000 for fiscal year 2022 to carry out this section, 
which shall remain available until expended. 
SEC. 5. RESEARCH WITH RESPECT TO MEDICAID COV-
ERAGE OF LONG-TERM SYMPTOMS OF COVID– 
19. 
(a) RESEARCH.—The Administrator of the Centers 
for Medicare & Medicaid Services (referred to in this sec-
tion as the ‘‘Administrator’’) shall expand the Chronic 
Conditions Data Warehouse research database of such 
Centers for Medicare and Medicaid Services to collect data 
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on items and services furnished to individuals experiencing 
post-acute sequelae of COVID–19 under a State plan (or 
a waiver of such a plan) under the Medicaid program 
under title XIX of the Social Security Act (42 U.S.C. 
1396 et seq.) or under a State child Health plan (or a 
waiver of such a plan) under the Children’s Health Insur-
ance Program under title XXI of such Act (42 U.S.C. 
1397aa et seq.) for the treatment of post-acute sequelae 
of COVID–19 for purposes of assessing the frequency at 
which COVID–19 survivors are furnished such items and 
services. 
(b) AUTHORIZATION OF APPROPRIATIONS.—There is 
authorized to be appropriated to carry out this section 
$3,000,000 for fiscal years 2022 to carry out this section, 
which shall remain available until expended. 
Æ 
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