[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[S. 2560 Introduced in Senate (IS)]

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118th CONGRESS
  1st Session
                                S. 2560

             To address and support research on Long COVID.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                             July 27, 2023

 Mr. Kaine (for himself and Mr. Young) introduced the following bill; 
     which was read twice and referred to the Committee on Health, 
                     Education, Labor, and Pensions

_______________________________________________________________________

                                 A BILL


 
             To address and support research on Long COVID.

    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 ``Long COVID Support Act''.

SEC. 2. VOLUNTARY PATIENT REGISTRY FOR RESEARCH ON LONG COVID AND 
              RELATED CONDITIONS.

    (a) In General.--The Secretary of Health and Human Services 
(referred to in this Act as the ``Secretary'') shall carry out 
activities described in subsection (b) for treatment related to Long 
COVID and related conditions.
    (b) Activities Described.--For purposes of subsection (a), 
activities described in this subsection shall include--
            (1) creating or maintaining a regularly updated voluntary 
        patient registry of individuals with suspected or confirmed 
        Long COVID and related conditions, including information on--
                    (A) symptoms that arise while an individual is 
                initially infected with COVID-19 and that may resolve 
                over time or extend beyond the resolution of the 
                initial symptoms;
                    (B) persistent symptoms that arise after an 
                individual is initially infected with COVID-19 and that 
                the clinician of such individual has reason to suspect 
                were related to the COVID-19 diagnosis;
                    (C) 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;
                    (D) treatments of individuals after primary 
                diagnosis of COVID-19 and the effectiveness of such 
                treatments;
                    (E) any other relevant questions or issues related 
                to individuals who experience a diagnosis of, treatment 
                for, and management of care with COVID-19, Long COVID, 
                and related conditions; and
                    (F) comorbidities, vaccination status, and 
                demographics, including age, gender, race and 
                ethnicity, geographic location, and occupation of 
                registry participants;
            (2) information relating to individuals experiencing Long 
        COVID and related conditions and other information available 
        through the voluntary patient registry;
            (3) dissemination of information to relevant Federal 
        departments and agencies and patients participating in the 
        voluntary patient registry related to COVID-19, Long COVID, and 
        related conditions;
            (4) an assurance that the voluntary patient registry 
        utilizes common data elements and definitions for use in order 
        to promote appropriate data sharing for ongoing and future 
        research; and
            (5) outreach to, and inclusion in the voluntary patient 
        registry, as appropriate, of individuals from communities 
        impacted by high COVID-19 and Long COVID rates and health care 
        providers from diverse disciplines that may treat individuals 
        with COVID-19, Long COVID, and related conditions.
    (c) Voluntary Participation; Privacy Protections.--
            (1) Voluntary participation.--Participation in the patient 
        registry described in subsection (b)(1) shall be voluntary, and 
        a person creating, assisting in the creation of, or maintaining 
        the registry shall not include in the registry information 
        about an individual unless the individual consents to the 
        inclusion of such information.
            (2) Privacy protections.--Information about an individual 
        that is included in the registry shall be subject to all 
        applicable privacy protections under Federal and State law.
    (d) Report.--Not later than 1 year after the establishment of the 
patient registry under subsection (b)(2), and annually thereafter, the 
Secretary shall submit a report that includes data, findings, and 
information with respect to the status of the patient registry 
(including progress, barriers, and issues) to Congress and the 
President.

SEC. 3. RESEARCH AND COORDINATION OF ACTIVITIES CONCERNING THE LONG-
              TERM HEALTH EFFECTS OF LONG COVID AND RELATED CONDITIONS.

    (a) In General.--The Secretary of Health and Human Services 
(referred to in this section as the ``Secretary'') shall, as 
appropriate--
            (1) coordinate activities among relevant Federal 
        departments and agencies with respect to addressing the long-
        term health effects of Long COVID and related conditions, which 
        may include conditions that arise as a result of such 
        infection;
            (2) continue to conduct or support basic, clinical, 
        epidemiological, behavioral, and translational research and 
        public health surveillance related to the pathogenesis, 
        prevention, diagnosis, and treatment of the long-term health 
        effects of Long COVID and related conditions, which may include 
        conditions and any effects on development, cognition, and 
        neural structure and function that arise as a result of such 
        infection; and
            (3) consistent with the findings of studies and research 
        under paragraph (1), in consultation with health and public 
        health professional associations, scientific and medical 
        researchers, and other relevant experts, develop and inform 
        recommendations, guidance, and educational materials on the 
        long-term effects of Long COVID and related conditions, which 
        may include conditions that arise as a result of such 
        infection, and provide such recommendations, guidance, and 
        educational materials to health care providers and the general 
        public.
    (b) Considerations.--In conducting or supporting research under 
this section, the Secretary shall consider the diversity of research 
participants or cohorts to ensure inclusion of a broad range of 
participants, as applicable and appropriate.
    (c) Additional Activities.--The Secretary may--
            (1) acting through the Director of the Agency for 
        Healthcare Research and Quality, conduct or support research 
        related to--
                    (A) the improvement of health care delivery for 
                individuals experiencing long-term health effects of 
                Long COVID and related conditions, which may include 
                conditions that arise as a result of such infection;
                    (B) the identification of any trends associated 
                with differences in diagnosis and treatment of the 
                long-term health effects of Long COVID and related 
                conditions; and
                    (C) the development or identification of tools and 
                strategies to help health care entities and providers 
                care for such populations, which may include addressing 
                any differences identified pursuant to subparagraph 
                (B);
            (2) publicly disseminate the results of such research; and
            (3) establish a primary care technical assistance 
        initiative to convene primary care providers and organizations, 
        which may include support for continuing training and education 
        for such providers, as applicable and appropriate, in order to 
        collect and disseminate best practices related to the care of 
        individuals with long-term health effects of Long COVID and 
        related conditions.
    (d) Annual Reports.--Not later than 1 year after the date of 
enactment of this Act, and annually thereafter for the next 4 years, 
the Secretary shall prepare and submit a report to the Committee on 
Health, Education, Labor, and Pensions of the Senate and the Committee 
on Energy and Commerce of the House of Representatives regarding an 
overview of the research conducted or supported under this section and 
any relevant findings. Such reports may include information about how 
the research and relevant findings under this section relate to other 
research efforts supported by other public or private entities.
    (e) Public Availability of Information.--In making information or 
reports publicly available under this section, the Secretary shall take 
into consideration the delivery of such information in a manner that 
takes into account the range of communication needs of the intended 
recipients, including at-risk individuals.
    (f) Authorization of Appropriations.--To carry out subsection (c), 
there are authorized to be appropriated $10,000,000 for each of fiscal 
years 2024 through 2028.

SEC. 4. EDUCATION AND DISSEMINATION OF INFORMATION ON LONG COVID.

    (a) Long COVID Public Education Program.--The Secretary shall 
develop and disseminate to the public regularly updated information 
regarding Long COVID, in plain language, including information on--
            (1) the awareness, incidence, and short- and long-term 
        health effects associated with COVID-19 infection;
            (2) conditions related and often comorbid with Long COVID;
            (3) the availability, as medically appropriate, of 
        treatment options for Long COVID and related conditions 
        overlapping with Long COVID described in paragraph (2); and
            (4) strategies for reducing the likelihood of developing 
        Long COVID.
    (b) Long COVID Provider Education Program.--The Secretary, in 
consultation with representatives from impacted communities and health 
care providers who treat such communities or individuals, shall develop 
and disseminate to health care providers, including by developing or 
improving continuing medical education programs that advance the 
education of such providers, information on Long COVID, recommended 
assessment tools, and management of Long COVID and related conditions 
for the purpose of ensuring that health care providers remain informed 
about current information on Long COVID and related conditions.
    (c) Considerations.--In developing and disseminating information in 
subsections (a) and (b), the Secretary shall ensure that--
            (1) guidance on Long COVID diagnostics, treatments, and 
        care include demographic factors to address health disparities; 
        and
            (2) individuals with Long COVID and related conditions, and 
        entities representing such individuals, are empowered to 
        participate in protocol development and outreach and education 
        strategies.
    (d) Dissemination of Information.--The Secretary shall disseminate, 
in plain language, information under subsections (a) and (b), directly 
or through arrangements with intra-agency initiatives, nonprofit 
organizations, consumer groups, Federally qualified health centers, 
institutions of higher learning (as defined in section 101 of the 
Higher Education Act of 1965 (20 U.S.C. 1001)), local educational 
agencies or State educational agencies (as defined in section 8101 of 
the Elementary and Secondary Education Act of 1965 (20 U.S.C. 7801)), 
or Federal, State, Tribal, or local public private partnerships.

SEC. 5. DEFINITION.

    In this Act, the term ``Long COVID'' means health conditions that 
may result, directly or indirectly, from COVID-19.
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