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 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 Trust 

Fund 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 TRUST FUND. 

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

6 Research Trust Fund under section 1181 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 (in this section, referred to 

16 as ‘‘PASC’’); 

17 (2) creating a patient registry for those with 

18 COVID–19 with information that— 

19 (A) contains the— 

20 (i) symptoms that arise while an indi21 vidual is initially infected with COVID–19 

22 and that resolve over time; 

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

25 and that extend beyond the resolution of 

26 initial symptoms; 


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1 (iii) symptoms that arise after an in2 dividual is initially 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, false negative test re11 sults, or lack of access to timely testing; 

12 (v) treatments of individuals after pri13 mary diagnosis to COVID–19 and the ef14 fectiveness of such treatments 

15 disaggregated by age, gender, race or eth16 nicity, and co-morbidities and related post17 viral illnesses overlapping with PASC; and 

18 (vi) any other relevant questions or 

19 issues related to individuals who experience 

20 a diagnosis of, treatment for, and manage21 ment of care with COVID–19, PASC, or 

22 related post-viral illnesses overlapping with 

23 PASC; and 

24 (B) synthesizes information relating to in25 dividuals experiencing post-acute sequelae of 


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1 COVID–19 identified from the survey described 

2 in paragraph (1) and information under the pa3 tient registry described in paragraph (2); and 

4 (3) outreach and inclusion (as appropriate) in5 dividuals from communities with PASC, traditional 

6 health 3 disparities and inequities and related post7 viral illnesses overlapping with PASC. 

8 (c) REPORT.—Not later than 1 year after the estab9 lishment of the synthesized patient registry described in 

10 subsection (a)(2), and annually thereafter, the Patient11 Centered Outcomes Research Institute shall submit data, 

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

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

14 to Congress and the President. 

15 (d) AUTHORIZATION OF APPROPRIATIONS.—There is 

16 hereby authorized $30,000,000 for fiscal year 2022 to 

17 carry out this section, which shall remain available until 

18 expended. 

19 SEC. 3. RESEARCH ON UNITED STATES HEALTH CARE SYS20 TEM’S RESPONSE TO LONG-TERM SYMPTOMS 

21 OF COVID–19. 

22 (a) IN GENERAL.—The Secretary of Health and 

23 Human Services, acting through the Director of the Agen24 cy for Healthcare Research and Quality, shall conduct or 

25 support research related to the United States health care 


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1 system’s response to long-term symptoms of COVID–19, 

2 including with respect to— 

3 (1) the expansion and efficacy of post-infectious 

4 disease treatment, including— 

5 (A) identifying obstacles to access for vet6 erans, the elderly, disabled, and low-income 

7 communities; 

8 (B) evaluating and identifying potential 

9 gaps or other weaknesses that bear on gender, 

10 geographic, racial and ethnic disparities on 

11 COVID–19 infection rates, severity and length 

12 of symptoms, and outcomes; 

13 (C) identifying gaps in compliance with 

14 health care privacy and security rules; and 

15 (D) evaluating whether diagnosis, access 

16 to, or treatment associated with medical pro17 viders and care delivered in different settings 

18 varied by gender, disability, geographic, racial 

19 and ethnic group; and 

20 (2) conducting and support rapid turnaround 

21 research to— 

22 (A) identify health care strategies that 

23 help mitigate gender, geographic, disability, ra24 cial and ethnic disparities in COVID–19 infecVerDate Sep 11 2014 23:14 Jun 15, 2021 Jkt 019200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H2754.IH H2754

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1 tion rates, severity and length of symptoms, 

2 secondary illnesses, and outcomes; 

3 (B) identify health care-related factors 

4 contributing to such disparities in COVID–19 

5 infection rates, hospitalizations, severity and 

6 length of disease, secondary illnesses, and out7 comes; and 

8 (C) provide recommendations on ensuring 

9 equity in diagnosis and access to quality post10 infectious treatments that may be advanced to 

11 mitigate such disparities, going forward. 

12 (b) PROTOCOLS ON PASC PATIENTS.—The Sec13 retary of Health and Human Services, acting through the 

14 Director of the Agency for Healthcare Research and Qual15 ity, shall coordinate cross-agency engagement with leaders 

16 from communities with PASC, traditional health dispari17 ties and inequities and related post-viral illnesses overlap18 ping with PASC— 

19 (1) to develop protocols that ensure PASC pa20 tients have access to medical professionals educated 

21 about post-infectious disease and treatments; and 

22 (2) to provide guidance on PASC diagnostics, 

23 treatments, and care that takes into account gender, 

24 geographic, racial and ethnic disparities. 


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1 (c) AUTHORIZATION OF APPROPRIATIONS.—There is 

2 authorized to be appropriated to carry out this section 

3 $30,000,000 for fiscal year 2022 to carry out this section, 

4 which shall remain available until expended. 

5 SEC. 4. EDUCATION AND DISSEMINATION OF INFORMATION 

6 WITH RESPECT TO LONG-TERM SYMPTOMS 

7 OF COVID–19. 

8 (a) POST-ACUTE SEQUELAE OF COVID–19 (PASC) 

9 PUBLIC EDUCATION PROGRAM.—The Secretary of Health 

10 and Human Services, acting through the Director of the 

11 Centers for Disease Control and Prevention, shall develop 

12 and disseminate to the public information regarding 

13 PASC, including information on— 

14 (1) the awareness, incidence, and common 

15 symptoms of PASC among COVID–19 patients; 

16 (2) illnesses related and often comorbid with 

17 PASC, including but not limited to, 

18 (A) myalgic encephalomyelitis/chronic fa19 tigue syndrome (ME/CFS) and fibromyalgia 

20 (FM); 

21 (B) postural orthostatic tachycardia syn22 drome (POTS) and other forms of 

23 dysautonomia; 

24 (C) autoimmune diseases associated with 

25 viral triggers; 


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1 (D) connective tissue diseases exacerbated 

2 or triggered by infections; and 

3 (E) mast cell activation syndrome (MCAS); 

4 and 

5 (3) the availability, as medically appropriate, of 

6 treatment options for PASC and related post-viral 

7 illnesses overlapping with PASC, as identified in sec8 tion (2) above. 

9 (b) POST-ACUTE SEQUELAE OF COVID–19 (PASC) 

10 PROVIDER EDUCATION PROGRAM.—The Secretary of 

11 Health and Human Services, acting through the Director 

12 of the Centers for Disease Control and Prevention, shall 

13 in consultation with communities with PASC, traditional 

14 health disparities and inequities and related post-viral ill15 nesses overlapping with PASC, develop and disseminate 

16 to health care providers information on PASC for the pur17 pose of ensuring that health care providers remain in18 formed about current information on this emerging illness 

19 and related post-infectious illnesses, which have been 

20 shown to be closely related to PASC including information 

21 on— 

22 (1) myalgic encephalomyelitis/chronic fatigue 

23 syndrome (ME/CFS) and fibromyalgia (FM); 

24 (2) postural orthostatic tachycardia syndrome 

25 (POTS) and other forms of dysautonomia; 


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1 (3) autoimmune diseases associated with viral 

2 triggers; 

3 (4) connective tissue diseases exacerbated or 

4 triggered by infections; and 

5 (5) mast cell activation syndrome (MCAS). 

6 (c) DISSEMINATION OF INFORMATION.—The Sec7 retary may disseminate information under subsection (a) 

8 and subsection (b) directly or through arrangements with 

9 intra-agency initiatives, nonprofit organizations, consumer 

10 groups, institutions of higher learning (as defined in sec11 tion 101 of the Higher Education Act of 1965 (20 U.S.C. 

12 1001)), or Federal, State, or local public private partner13 ships. 

14 (d) AUTHORIZATION OF APPROPRIATIONS.—There is 

15 authorized to be appropriated to carry out this section 

16 $30,000,000 for fiscal year 2022 to carry out this section, 

17 which shall remain available until expended. 

18 SEC. 5. RESEARCH WITH RESPECT TO MEDICAID COV19 ERAGE OF LONG-TERM SYMPTOMS OF COVID– 

20 19. 

21 (a) RESEARCH.—The Administrator of the Centers 

22 for Medicare & Medicaid Services (referred to in this sec23 tion as the ‘‘Administrator’’) shall expand the Chronic 

24 Conditions Data Warehouse research database of such 

25 Centers for Medicare and Medicaid Services to collect data 


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1 on items and services furnished to individuals experiencing 

2 post-acute sequelae of COVID–19 under a State plan (or 

3 a waiver of such a plan) under the Medicaid program 

4 under title XIX of the Social Security Act (42 U.S.C. 

5 1396 et seq.) or under a State child Health plan (or a 

6 waiver of such a plan) under the Children’s Health Insur7 ance Program under title XXI of such Act (42 U.S.C. 

8 1397aa et seq.) for the treatment of post-acute sequelae 

9 of COVID–19 for purposes of assessing the frequency at 

10 which COVID–19 survivors are furnished such items and 

11 services. 

12 (b) AUTHORIZATION OF APPROPRIATIONS.—There is 

13 authorized to be appropriated to carry out this section 

14 $3,000,000 for fiscal years 2022 to carry out this section, 

15 which shall remain available until expended. 

Æ 


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