COVID–19 Long Haulers Act

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 juris- diction of the committee concerned A BILL To authorize the Patient-Centered Outcomes Research Insti- tute to fund research of the symptoms of COVID–19, and for other purposes. Be it enacted by the Senate and House of Representa- 1 tives of the United States of America in Congress assembled, 2 SECTION 1. SHORT TITLE. 3 This Act may be cited as the ‘‘COVID–19 Long 4 Haulers Act’’. 5 VerDate Sep 11 2014 02:39 Jan 05, 2021 Jkt 019200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\H9027.IH H9027 SSpencer on DSK126QN23PROD with BILLS 2 •HR 9027 IH SEC. 2. AUTHORIZATION TO FUND RESEARCH OF THE 1 LONG-TERM SYMPTOMS OF COVID–19 BY THE 2 PATIENT-CENTERED OUTCOMES RESEARCH 3 INSTITUTE. 4 (a) IN GENERAL.—The Patient-Centered Outcomes 5 Research Institute under section 1181(b) of the Social Se- 6 curity Act (42 U.S.C. 1320e(b)) shall fund research de- 7 scribed in subsection (b). 8 (b) RESEARCH DESCRIBED.—For purposes of sub- 9 section (a), research described in this subsection shall in- 10 clude— 11 (1) prior to creating a patient registry described 12 in paragraph (2), survey existing patient registries 13 that include individuals experiencing post-acute 14 sequelae of COVID–19; 15 (2) creating a patient registry for those with 16 COVID–19 with information that— 17 (A) contains the— 18 (i) symptoms that arise while an indi- 19 vidual is actively infected with COVID–19 20 and that resolve while such individual is 21 actively infected; 22 (ii) symptoms that arise while an indi- 23 vidual is actively infected with COVID–19 24 and that extend after the infection has re- 25 solved; 26 VerDate Sep 11 2014 02:39 Jan 05, 2021 Jkt 019200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H9027.IH H9027 SSpencer on DSK126QN23PROD with BILLS 3 •HR 9027 IH (iii) symptoms that arise after an in- 1 dividual is actively infected with COVID– 2 19 and that endure and that the clinician 3 of such individual has reason to suspect 4 were related to the COVID–19 diagnosis; 5 (iv) symptoms that arise in an indi- 6 vidual that may be related to COVID–19 7 but a diagnosis of COVID–19 was not ob- 8 tained and cannot be identified due to a 9 lack of antibodies; 10 (v) treatments of individuals after pri- 11 mary diagnosis to COVID–19 and the ef- 12 fectiveness of such treatments disaggre- 13 gated by age, gender, and race or eth- 14 nicity; and 15 (vi) any other relevant questions or 16 issues related to individuals who experience 17 a diagnosis of, treatment for, and manage- 18 ment of care with COVID–19; 19 (B) synthesizes information relating to in- 20 dividuals experiencing post-acute sequelae of 21 COVID–19 identified from the survey described 22 in paragraph (1) and information under the pa- 23 tient registry described in paragraph (2); and 24 VerDate Sep 11 2014 02:39 Jan 05, 2021 Jkt 019200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H9027.IH H9027 SSpencer on DSK126QN23PROD with BILLS 4 •HR 9027 IH (3) outreach and inclusion (as appropriate) in- 1 dividuals from communities with traditional health 2 disparities and inequities. 3 (c) REPORT.—Not later than 1 year after the estab- 4 lishment of the synthesized patient registry described in 5 subsection (a)(2), and annually thereafter, the Patient- 6 Centered Outcomes Research Institute shall submit data, 7 findings, and information with respect to the status of the 8 patient registry (including progress, barriers, and issues) 9 to Congress and the President. 10 (d) AUTHORIZATION OF APPROPRIATIONS.—There is 11 hereby authorized $30,000,000 for fiscal year 2021 to 12 carry out this section, which shall remain available until 13 expended. 14 SEC. 3. AUTHORIZATION OF APPROPRIATIONS FOR RE- 15 SEARCH WITH RESPECT TO INDIVIDUALS EX- 16 PERIENCING POST-ACUTE SEQUELAE OF 17 COVID–19 BY THE NIH. 18 (a) IN GENERAL.—The Director of the National In- 19 stitutes of Health conduct research with respect to individ- 20 uals experiencing post-acute sequelae of COVID–19. 21 (b) AUTHORIZATION OF APPROPRIATIONS.—There is 22 hereby authorized $100,000,000 for fiscal year 2021 to 23 VerDate Sep 11 2014 02:39 Jan 05, 2021 Jkt 019200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H9027.IH H9027 SSpencer on DSK126QN23PROD with BILLS 5 •HR 9027 IH carry out this section, which shall remain available until 1 expended. 2 Æ VerDate Sep 11 2014 02:39 Jan 05, 2021 Jkt 019200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6301 E:\BILLS\H9027.IH H9027 SSpencer on DSK126QN23PROD with BILLS