I 

116TH CONGRESS 

2D SESSION H. R. 9027 

To authorize the Patient-Centered Outcomes Research Institute to fund 

research of the symptoms of COVID–19, and for other purposes. 

IN THE HOUSE OF REPRESENTATIVES 

DECEMBER 18, 2020 

Mr. BEYER 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 subsequently 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 Institute to fund research of the symptoms of COVID–19, 

and for other purposes. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘COVID–19 Long 

5 Haulers Act’’. 


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1 SEC. 2. AUTHORIZATION TO FUND RESEARCH OF THE 

2 LONG-TERM SYMPTOMS OF COVID–19 BY THE 

3 PATIENT-CENTERED OUTCOMES RESEARCH 

4 INSTITUTE. 

5 (a) IN GENERAL.—The Patient-Centered Outcomes 

6 Research Institute under section 1181(b) of the Social Se7 curity Act (42 U.S.C. 1320e(b)) shall fund research de8 scribed in subsection (b). 

9 (b) RESEARCH DESCRIBED.—For purposes of sub10 section (a), research described in this subsection shall in11 clude— 

12 (1) prior to creating a patient registry described 

13 in paragraph (2), survey existing patient registries 

14 that include individuals experiencing post-acute 

15 sequelae of COVID–19; 

16 (2) creating a patient registry for those with 

17 COVID–19 with information that— 

18 (A) contains the— 

19 (i) symptoms that arise while an indi20 vidual is actively infected with COVID–19 

21 and that resolve while such individual is 

22 actively infected; 

23 (ii) symptoms that arise while an indi24 vidual is actively infected with COVID–19 

25 and that extend after the infection has re26 solved; 


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1 (iii) symptoms that arise after an in2 dividual is actively infected with COVID– 

3 19 and that endure and that the clinician 

4 of such individual has reason to suspect 

5 were related to the COVID–19 diagnosis; 

6 (iv) symptoms that arise in an indi7 vidual that may be related to COVID–19 

8 but a diagnosis of COVID–19 was not ob9 tained and cannot be identified due to a 

10 lack of antibodies; 

11 (v) treatments of individuals after pri12 mary diagnosis to COVID–19 and the ef13 fectiveness of such treatments disaggre14 gated by age, gender, and race or eth15 nicity; and 

16 (vi) any other relevant questions or 

17 issues related to individuals who experience 

18 a diagnosis of, treatment for, and manage19 ment of care with COVID–19; 

20 (B) synthesizes information relating to in21 dividuals experiencing post-acute sequelae of 

22 COVID–19 identified from the survey described 

23 in paragraph (1) and information under the pa24 tient registry described in paragraph (2); and 


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1 (3) outreach and inclusion (as appropriate) in2 dividuals from communities with traditional health 

3 disparities and inequities. 

4 (c) REPORT.—Not later than 1 year after the estab5 lishment of the synthesized patient registry described in 

6 subsection (a)(2), and annually thereafter, the Patient7 Centered Outcomes Research Institute shall submit data, 

8 findings, and information with respect to the status of the 

9 patient registry (including progress, barriers, and issues) 

10 to Congress and the President. 

11 (d) AUTHORIZATION OF APPROPRIATIONS.—There is 

12 hereby authorized $30,000,000 for fiscal year 2021 to 

13 carry out this section, which shall remain available until 

14 expended. 

15 SEC. 3. AUTHORIZATION OF APPROPRIATIONS FOR RE16 SEARCH WITH RESPECT TO INDIVIDUALS EX17 PERIENCING POST-ACUTE SEQUELAE OF 

18 COVID–19 BY THE NIH. 

19 (a) IN GENERAL.—The Director of the National In20 stitutes of Health conduct research with respect to individ21 uals experiencing post-acute sequelae of COVID–19. 

22 (b) AUTHORIZATION OF APPROPRIATIONS.—There is 

23 hereby authorized $100,000,000 for fiscal year 2021 to 


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1 carry out this section, which shall remain available until 

2 expended. 

Æ 


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