COVID–19 Long Haulers Act

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- 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 23:14 Jun 15, 2021 Jkt 019200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\H2754.IH H2754 pamtmann on DSKBC07HB2PROD with BILLS 2 •HR 2754 IH SEC. 2. AUTHORIZATION TO FUND RESEARCH OF THE 1 LONG-TERM SYMPTOMS OF COVID–19 BY THE 2 PATIENT-CENTERED OUTCOMES RESEARCH 3 TRUST FUND. 4 (a) IN GENERAL.—The Patient-Centered Outcomes 5 Research Trust Fund under section 1181 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 (in this section, referred to 15 as ‘‘PASC’’); 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 indi- 20 vidual is initially infected with COVID–19 21 and that resolve over time; 22 (ii) symptoms that arise while an indi- 23 vidual is initially infected with COVID–19 24 and that extend beyond the resolution of 25 initial symptoms; 26 VerDate Sep 11 2014 23:14 Jun 15, 2021 Jkt 019200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H2754.IH H2754 pamtmann on DSKBC07HB2PROD with BILLS 3 •HR 2754 IH (iii) symptoms that arise after an in- 1 dividual is initially 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, false negative test re- 10 sults, or lack of access to timely testing; 11 (v) treatments of individuals after pri- 12 mary diagnosis to COVID–19 and the ef- 13 fectiveness of such treatments 14 disaggregated by age, gender, race or eth- 15 nicity, and co-morbidities and related post- 16 viral illnesses overlapping with PASC; and 17 (vi) any other relevant questions or 18 issues related to individuals who experience 19 a diagnosis of, treatment for, and manage- 20 ment of care with COVID–19, PASC, or 21 related post-viral illnesses overlapping with 22 PASC; and 23 (B) synthesizes information relating to in- 24 dividuals experiencing post-acute sequelae of 25 VerDate Sep 11 2014 23:14 Jun 15, 2021 Jkt 019200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H2754.IH H2754 pamtmann on DSKBC07HB2PROD with BILLS 4 •HR 2754 IH COVID–19 identified from the survey described 1 in paragraph (1) and information under the pa- 2 tient registry described in paragraph (2); and 3 (3) outreach and inclusion (as appropriate) in- 4 dividuals from communities with PASC, traditional 5 health 3 disparities and inequities and related post- 6 viral illnesses overlapping with PASC. 7 (c) REPORT.—Not later than 1 year after the estab- 8 lishment of the synthesized patient registry described in 9 subsection (a)(2), and annually thereafter, the Patient- 10 Centered Outcomes Research Institute shall submit data, 11 findings, and information with respect to the status of the 12 patient registry (including progress, barriers, and issues) 13 to Congress and the President. 14 (d) AUTHORIZATION OF APPROPRIATIONS.—There is 15 hereby authorized $30,000,000 for fiscal year 2022 to 16 carry out this section, which shall remain available until 17 expended. 18 SEC. 3. RESEARCH ON UNITED STATES HEALTH CARE SYS- 19 TEM’S RESPONSE TO LONG-TERM SYMPTOMS 20 OF COVID–19. 21 (a) IN GENERAL.—The Secretary of Health and 22 Human Services, acting through the Director of the Agen- 23 cy for Healthcare Research and Quality, shall conduct or 24 support research related to the United States health care 25 VerDate Sep 11 2014 23:14 Jun 15, 2021 Jkt 019200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H2754.IH H2754 pamtmann on DSKBC07HB2PROD with BILLS 5 •HR 2754 IH system’s response to long-term symptoms of COVID–19, 1 including with respect to— 2 (1) the expansion and efficacy of post-infectious 3 disease treatment, including— 4 (A) identifying obstacles to access for vet- 5 erans, the elderly, disabled, and low-income 6 communities; 7 (B) evaluating and identifying potential 8 gaps or other weaknesses that bear on gender, 9 geographic, racial and ethnic disparities on 10 COVID–19 infection rates, severity and length 11 of symptoms, and outcomes; 12 (C) identifying gaps in compliance with 13 health care privacy and security rules; and 14 (D) evaluating whether diagnosis, access 15 to, or treatment associated with medical pro- 16 viders and care delivered in different settings 17 varied by gender, disability, geographic, racial 18 and ethnic group; and 19 (2) conducting and support rapid turnaround 20 research to— 21 (A) identify health care strategies that 22 help mitigate gender, geographic, disability, ra- 23 cial and ethnic disparities in COVID–19 infec- 24 VerDate Sep 11 2014 23:14 Jun 15, 2021 Jkt 019200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H2754.IH H2754 pamtmann on DSKBC07HB2PROD with BILLS 6 •HR 2754 IH tion rates, severity and length of symptoms, 1 secondary illnesses, and outcomes; 2 (B) identify health care-related factors 3 contributing to such disparities in COVID–19 4 infection rates, hospitalizations, severity and 5 length of disease, secondary illnesses, and out- 6 comes; and 7 (C) provide recommendations on ensuring 8 equity in diagnosis and access to quality post- 9 infectious treatments that may be advanced to 10 mitigate such disparities, going forward. 11 (b) PROTOCOLS ON PASC PATIENTS.—The Sec- 12 retary of Health and Human Services, acting through the 13 Director of the Agency for Healthcare Research and Qual- 14 ity, shall coordinate cross-agency engagement with leaders 15 from communities with PASC, traditional health dispari- 16 ties and inequities and related post-viral illnesses overlap- 17 ping with PASC— 18 (1) to develop protocols that ensure PASC pa- 19 tients have access to medical professionals educated 20 about post-infectious disease and treatments; and 21 (2) to provide guidance on PASC diagnostics, 22 treatments, and care that takes into account gender, 23 geographic, racial and ethnic disparities. 24 VerDate Sep 11 2014 23:14 Jun 15, 2021 Jkt 019200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\H2754.IH H2754 pamtmann on DSKBC07HB2PROD with BILLS 7 •HR 2754 IH (c) AUTHORIZATION OF APPROPRIATIONS.—There is 1 authorized to be appropriated to carry out this section 2 $30,000,000 for fiscal year 2022 to carry out this section, 3 which shall remain available until expended. 4 SEC. 4. EDUCATION AND DISSEMINATION OF INFORMATION 5 WITH RESPECT TO LONG-TERM SYMPTOMS 6 OF COVID–19. 7 (a) POST-ACUTE SEQUELAE OF COVID–19 (PASC) 8 PUBLIC EDUCATION PROGRAM.—The Secretary of Health 9 and Human Services, acting through the Director of the 10 Centers for Disease Control and Prevention, shall develop 11 and disseminate to the public information regarding 12 PASC, including information on— 13 (1) the awareness, incidence, and common 14 symptoms of PASC among COVID–19 patients; 15 (2) illnesses related and often comorbid with 16 PASC, including but not limited to, 17 (A) myalgic encephalomyelitis/chronic fa- 18 tigue syndrome (ME/CFS) and fibromyalgia 19 (FM); 20 (B) postural orthostatic tachycardia syn- 21 drome (POTS) and other forms of 22 dysautonomia; 23 (C) autoimmune diseases associated with 24 viral triggers; 25 VerDate Sep 11 2014 23:14 Jun 15, 2021 Jkt 019200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\H2754.IH H2754 pamtmann on DSKBC07HB2PROD with BILLS 8 •HR 2754 IH (D) connective tissue diseases exacerbated 1 or triggered by infections; and 2 (E) mast cell activation syndrome (MCAS); 3 and 4 (3) the availability, as medically appropriate, of 5 treatment options for PASC and related post-viral 6 illnesses overlapping with PASC, as identified in sec- 7 tion (2) above. 8 (b) POST-ACUTE SEQUELAE OF COVID–19 (PASC) 9 PROVIDER EDUCATION PROGRAM.—The Secretary of 10 Health and Human Services, acting through the Director 11 of the Centers for Disease Control and Prevention, shall 12 in consultation with communities with PASC, traditional 13 health disparities and inequities and related post-viral ill- 14 nesses overlapping with PASC, develop and disseminate 15 to health care providers information on PASC for the pur- 16 pose of ensuring that health care providers remain in- 17 formed about current information on this emerging illness 18 and related post-infectious illnesses, which have been 19 shown to be closely related to PASC including information 20 on— 21 (1) myalgic encephalomyelitis/chronic fatigue 22 syndrome (ME/CFS) and fibromyalgia (FM); 23 (2) postural orthostatic tachycardia syndrome 24 (POTS) and other forms of dysautonomia; 25 VerDate Sep 11 2014 23:14 Jun 15, 2021 Jkt 019200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\H2754.IH H2754 pamtmann on DSKBC07HB2PROD with BILLS 9 •HR 2754 IH (3) autoimmune diseases associated with viral 1 triggers; 2 (4) connective tissue diseases exacerbated or 3 triggered by infections; and 4 (5) mast cell activation syndrome (MCAS). 5 (c) DISSEMINATION OF INFORMATION.—The Sec- 6 retary may disseminate information under subsection (a) 7 and subsection (b) directly or through arrangements with 8 intra-agency initiatives, nonprofit organizations, consumer 9 groups, institutions of higher learning (as defined in sec- 10 tion 101 of the Higher Education Act of 1965 (20 U.S.C. 11 1001)), or Federal, State, or local public private partner- 12 ships. 13 (d) AUTHORIZATION OF APPROPRIATIONS.—There is 14 authorized to be appropriated to carry out this section 15 $30,000,000 for fiscal year 2022 to carry out this section, 16 which shall remain available until expended. 17 SEC. 5. RESEARCH WITH RESPECT TO MEDICAID COV- 18 ERAGE OF LONG-TERM SYMPTOMS OF COVID– 19 19. 20 (a) RESEARCH.—The Administrator of the Centers 21 for Medicare & Medicaid Services (referred to in this sec- 22 tion as the ‘‘Administrator’’) shall expand the Chronic 23 Conditions Data Warehouse research database of such 24 Centers for Medicare and Medicaid Services to collect data 25 VerDate Sep 11 2014 23:14 Jun 15, 2021 Jkt 019200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\H2754.IH H2754 pamtmann on DSKBC07HB2PROD with BILLS 10 •HR 2754 IH on items and services furnished to individuals experiencing 1 post-acute sequelae of COVID–19 under a State plan (or 2 a waiver of such a plan) under the Medicaid program 3 under title XIX of the Social Security Act (42 U.S.C. 4 1396 et seq.) or under a State child Health plan (or a 5 waiver of such a plan) under the Children’s Health Insur- 6 ance Program under title XXI of such Act (42 U.S.C. 7 1397aa et seq.) for the treatment of post-acute sequelae 8 of COVID–19 for purposes of assessing the frequency at 9 which COVID–19 survivors are furnished such items and 10 services. 11 (b) AUTHORIZATION OF APPROPRIATIONS.—There is 12 authorized to be appropriated to carry out this section 13 $3,000,000 for fiscal years 2022 to carry out this section, 14 which shall remain available until expended. 15 Æ VerDate Sep 11 2014 23:14 Jun 15, 2021 Jkt 019200 PO 00000 Frm 00010 Fmt 6652 Sfmt 6301 E:\BILLS\H2754.IH H2754 pamtmann on DSKBC07HB2PROD with BILLS