Title: COVID–19 Long Haulers Act
Policy area: Health

Summary:
COVID-19 Long Haulers Act
This bill requires multiple agencies to carry out research and other activities concerning individuals experiencing post-acute sequelae of COVID-19, or PASC, including health disparities related to this condition. PASC refers to persistent, long-term symptoms following recovery from acute COVID-19.
First, the bill requires the Patient-Centered Outcomes Research Trust Fund to support a patient registry to collect information on the symptoms, treatment, demographics, and other relevant data of COVID-19 patients.
Second, the Agency for Healthcare Research and Quality (AHRQ) must conduct or support research on the U.S. health care system's response to long-term symptoms of COVID-19. AHRQ must also develop protocols and guidance to educate medical professionals about PASC diagnostics, treatment, and care.
Third, the Centers for Disease Control and Prevention must disseminate information about the common symptoms, treatment options, and disparities that pertain to PASC and related post-infectious illnesses.
Last, the Centers for Medicare & Medicaid Services must expand its Chronic Conditions Data Warehouse to collect data on items and services furnished through Medicaid or the Children's Health Insurance Program to individuals who experience PASC.

[Congressional Bills 117th Congress]
[From the U.S. Government Publishing Office]
[H.R. 2754 Introduced in House (IH)]

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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.

    Be it enacted by the Senate and House of Representatives 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''.

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 Security Act (42 U.S.C. 1320e(b)) 
shall fund research described in subsection (b).
    (b) Research Described.--For purposes of subsection (a), research 
described in this subsection shall include--
            (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 individual 
                        is initially infected with COVID-19 and that 
                        resolve over time;
                            (ii) symptoms that arise while an 
                        individual is initially infected with COVID-19 
                        and that extend beyond the resolution of 
                        initial symptoms;
                            (iii) symptoms that arise after an 
                        individual 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 individual 
                        that may be related to COVID-19 but a diagnosis 
                        of COVID-19 was not obtained and cannot be 
                        identified due to a lack of antibodies, false 
                        negative test results, or lack of access to 
                        timely testing;
                            (v) treatments of individuals after primary 
                        diagnosis to COVID-19 and the effectiveness of 
                        such treatments disaggregated by age, gender, 
                        race or ethnicity, 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 management of 
                        care with COVID-19, PASC, or related post-viral 
                        illnesses overlapping with PASC; and
                    (B) synthesizes information relating to individuals 
                experiencing post-acute sequelae of COVID-19 identified 
                from the survey described in paragraph (1) and 
                information under the patient registry described in 
                paragraph (2); and
            (3) outreach and inclusion (as appropriate) individuals 
        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 establishment 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 SYSTEM'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 Agency for Healthcare Research and Quality, 
shall conduct or support research related to the United States health 
care 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 veterans, 
                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 providers 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, racial and 
                ethnic disparities in COVID-19 infection 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 outcomes; 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 Secretary of Health and Human 
Services, acting through the Director of the Agency for Healthcare 
Research and Quality, shall coordinate cross-agency engagement with 
leaders from communities with PASC, traditional health disparities and 
inequities and related post-viral illnesses overlapping with PASC--
            (1) to develop protocols that ensure PASC patients 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.
    (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 fatigue 
                syndrome (ME/CFS) and fibromyalgia (FM);
                    (B) postural orthostatic tachycardia syndrome 
                (POTS) and other forms of dysautonomia;
                    (C) autoimmune diseases associated with viral 
                triggers;
                    (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 section (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 illnesses overlapping 
with PASC, develop and disseminate to health care providers information 
on PASC for the purpose of ensuring that health care providers remain 
informed 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;
            (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 Secretary 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 section 
101 of the Higher Education Act of 1965 (20 U.S.C. 1001)), or Federal, 
State, or local public private partnerships.
    (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 COVERAGE OF LONG-TERM 
              SYMPTOMS OF COVID-19.

    (a) Research.--The Administrator of the Centers for Medicare & 
Medicaid Services (referred to in this section as the 
``Administrator'') shall expand the Chronic Conditions Data Warehouse 
research database of such Centers for Medicare and Medicaid Services to 
collect data 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 
Insurance 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.
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