[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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