[Congressional Bills 117th Congress]
[From the U.S. Government Publishing Office]
[S. 3726 Introduced in Senate (IS)]
<DOC>
117th CONGRESS
2d Session
S. 3726
To address research on, and improve access to, supportive services for
individuals with long COVID.
_______________________________________________________________________
IN THE SENATE OF THE UNITED STATES
March 2, 2022
Mr. Kaine (for himself, Mr. Markey, and Ms. Duckworth) introduced the
following bill; which was read twice and referred to the Committee on
Health, Education, Labor, and Pensions
_______________________________________________________________________
A BILL
To address research on, and improve access to, supportive services for
individuals with 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 ``Comprehensive Access to Resources
and Education for Long COVID Act'' or the ``CARE for Long COVID 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 activities described in subsection (b) to improve treatment
and outcomes for individuals with PASC.
(b) Activities Described.--For purposes of subsection (a),
activities described in this subsection shall include--
(1) prior to creating a patient registry described in
paragraph (2)--
(A) surveying existing patient registries that
include individuals experiencing PASC and other
relevant chronic disease or health registries; and
(B) identifying common data elements and
definitions for use, in order to promote appropriate
data sharing for ongoing and future research;
(2) creating a patient registry, informed by the survey
described in paragraph (1), for individuals with suspected or
confirmed PASC and related post-viral illnesses or conditions--
(A) with information that is culturally and
linguistically appropriate and easily accessible to
people with disabilities, and which may include--
(i) 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;
(ii) 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;
(iii) 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;
(iv) treatments of individuals after
primary diagnosis of COVID-19 and the
effectiveness of such treatments; and
(v) 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;
(B) that collects information regarding co-
morbidities, vaccination status, and demographics,
including age, gender, race and ethnicity, geographic
location, disability, and occupation of registry
participants;
(C) that synthesizes information relating to
individuals experiencing PASC or related post-viral
illnesses or conditions from the survey described in
paragraph (1) and other information available through
the patient registry; and
(D) that disseminates information to relevant
Federal departments and agencies and patients
participating in the registry to inform treatment and
policy related to COVID-19, PASC, or related post-viral
illnesses and conditions; and
(3) outreach to, and inclusion (as appropriate) of,
individuals, including children and older adults, from
communities impacted by high COVID-19 rates, communities
affected by health disparities and inequities, including Indian
Tribes and Tribal organizations, urban Indian organizations,
people with disabilities, individuals with related post-viral
illnesses or conditions, health care providers, first
responders, and frontline workers who may be impacted by high
COVID-19 rates, and health care providers from diverse
disciplines that may treat individuals with COVID-19, PASC, or
related post-viral illnesses and conditions.
(c) Privacy Protections.--Participation in the registry described
in subsection (b)(2) shall be voluntary and personal and health
information of participants, including information voluntarily
submitted through the registry, shall be subject to all applicable
privacy protections under Federal or State law.
(d) Report.--Not later than 1 year after the establishment of the
synthesized patient registry under subsection (b)(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.
(e) Authorization of Appropriations.--To carry out this section,
there is authorized to be appropriated $30,000,000 for fiscal year
2023, which shall remain available until expended.
SEC. 3. RESEARCH ON UNITED STATES HEALTH CARE SYSTEM'S RESPONSE TO
PASC.
(a) In General.--The Secretary of Health and Human Services
(referred to in this Act as the ``Secretary''), in coordination with
the Director of the Agency for Healthcare Research and Quality, the
Director of the National Institutes of Health, and the Director of the
Centers for Disease Control and Prevention, shall conduct or support
research related to the United States health care system's response to
PASC, including with respect to--
(1) the expansion and efficacy of post-infectious disease
treatment, including--
(A) identifying obstacles to access for treatment
of COVID-19, PASC, or related post-viral illnesses and
conditions for veterans, older adults, people with
disabilities, children and young adults, communities of
color, underserved and rural communities, and other
groups impacted by high rates of COVID-19, as
determined by the Secretary;
(B) evaluating and identifying potential gaps or
other weaknesses that contribute to age, gender,
geographic location, disability, occupation, and racial
and ethnic disparities with respect to COVID-19
infection rates, severity and length of symptoms, and
outcomes; and
(C) identifying trends associated with differences
in diagnosis and treatment of PASC and related post-
viral illnesses and conditions by demographic factors
such as age, gender, geographic location, disability,
occupation, race, ethnicity, or other factors
identified by the Secretary to promote health equity;
and
(2) conducting and supporting research to--
(A) identify health care strategies that help
mitigate age, gender, geographic location, disability,
occupation, and racial and ethnic disparities in COVID-
19 infection rates, hospitalizations, 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
symptoms, 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) Authorization of Appropriations.--To carry out this section,
there is authorized to be appropriated $15,000,000 for fiscal year
2023, which shall remain available until expended.
SEC. 4. EDUCATION AND DISSEMINATION OF INFORMATION ON PASC.
(a) Post-Acute Sequelae of COVID-19 (PASC) Public Education
Program.--The Secretary, acting through the Director of the Centers for
Disease Control and Prevention, shall develop and disseminate to the
public information regarding PASC, in plain language and in a manner
that is culturally and linguistically appropriate and easily accessible
to people with disabilities and people with limited English
proficiency, including information on--
(1) the awareness, incidence, and short- and long-term
health effects associated with COVID-19 infection;
(2) illnesses related and often comorbid with PASC, which
may include--
(A) myalgic encephalomyelitis/chronic fatigue
syndrome and fibromyalgia;
(B) postural orthostatic tachycardia syndrome and
other forms of dysautonomia;
(C) autoimmune diseases associated with viral
triggers;
(D) connective tissue diseases exacerbated or
triggered by infections;
(E) mast cell activation syndrome;
(F) related conditions and illnesses that may
affect adults, young adults, or children; and
(G) other conditions, as the Secretary determines
appropriate; and
(3) the availability, as medically appropriate, of
treatment options for PASC and related post-viral illnesses and
conditions overlapping with PASC identified under paragraph
(2).
(b) Post-Acute Sequelae of COVID-19 (PASC) Provider Education
Program.--The Secretary, acting through the Director of the Centers for
Disease Control and Prevention, shall, in consultation with
representatives from impacted communities and health care providers who
treat these communities or individuals, develop and disseminate to
health care providers information on PASC, recommended assessment
tools, and management of PASC and related conditions for the purpose of
ensuring that health care providers remain informed about current
information on such emerging illness and related post-infectious
illnesses, which have been shown to be closely related to PASC,
including information on--
(1) PASC symptoms such as cognitive, neurological,
psychiatric, gastrointestinal, respiratory, and cardiovascular
symptoms;
(2) myalgic encephalomyelitis/chronic fatigue syndrome and
fibromyalgia;
(3) postural orthostatic tachycardia syndrome and other
forms of dysautonomia;
(4) autoimmune diseases associated with viral triggers;
(5) connective tissue diseases exacerbated or triggered by
infections;
(6) mast cell activation syndrome;
(7) related conditions and illnesses that may affect
adults, young adults, or children; and
(8) other conditions as the Secretary determines
appropriate.
(c) Considerations.--In developing and disseminating information in
subsections (a) and (b), the Secretary shall ensure that--
(1) guidance on PASC diagnostics, treatments, and care
include demographic factors such as age, gender, geographic
location, disability, occupation, race and ethnicity, and other
factors identified by the Secretary to promote health equity;
and
(2) individuals with PASC or related post-viral illnesses
and 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 and in a manner that is culturally and linguistically
appropriate and easily accessible to people with disabilities and
individuals with limited English proficiency, information under
subsections (a) and (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)), 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.
(e) Authorization of Appropriations.--To carry out this section,
there is authorized to be appropriated $30,000,000 for each of fiscal
years 2023 through 2025, which shall remain available until expended.
SEC. 5. INTERAGENCY COORDINATION ON PUBLIC ENGAGEMENT AND INFORMATION
DISSEMINATION ON PASC.
(a) In General.--The Secretary of Health and Human Services shall
convene relevant agencies to develop information and resources to make
available to the public and for dissemination to individuals and
communities impacted by PASC and related post-viral illness and
conditions to raise awareness and provide education on the impact PASC
or related post-viral illness and conditions may have on rights
associated with employment, disability status, and education afforded
under Federal and State law.
(b) Collaboration and Consultation.--In developing the information
and resources under subsection (a), the Secretary of Health and Human
Services--
(1) shall collaborate with--
(A) the Department of Labor, including the Office
of Disability Employment Policy of the Department of
Labor;
(B) the Department of Education;
(C) the Social Security Administration;
(D) relevant agencies within the Department of
Health and Human Services, including--
(i) the Centers for Disease Control and
Prevention;
(ii) the National Institutes of Health;
(iii) the Centers for Medicare & Medicaid
Services;
(iv) the Administration for Children and
Families; and
(v) the Administration on Community Living;
and
(E) other Federal departments, agencies, or
offices, as the Secretary determines appropriate to
carry out the activities described in this section; and
(2) may consult with--
(A) communities and professions impacted by high
COVID-19 rates;
(B) individuals with PASC or related post-viral
illnesses and conditions; and
(C) organizations and experts that represent the
rights and interests of the groups described in
subparagraphs (A) and (B).
(c) Information and Resources Developed.--Not later than 1 year
after the date of enactment of this Act, the entities described in
subsection (b) shall develop information and resources to include--
(1) educational materials to school administrators,
counselors, educators, parents, coaches, school nurses, and
other school staff about PASC and related post-viral illnesses
and conditions with clear guidance on appropriate academic,
social, and emotional supports and services, and the rights of
students with disabilities, available to students and families;
(2) guidance for employers on the rights of people with
disabilities related to PASC and related post-viral illnesses
and conditions; and
(3) guidance on PASC and related post-viral illnesses and
conditions as a disability, including recommendations to
streamline the process of applying for benefits through the
Social Security Administration, including guidance on
evaluating PASC and related post-viral illnesses and conditions
for individuals under the age of 18, continuing disability
reviews, and the payment of benefits under part L of title I of
the Omnibus Crime Control and Safe Streets Act of 1968 (34
U.S.C. 10281 et seq.).
(d) Appropriations.--To carry out this section, there is authorized
to be appropriated $30,000,000 for each of fiscal years 2023 through
2025, which shall remain available until expended.
SEC. 6. RESEARCH WITH RESPECT TO MEDICAID COVERAGE OF LONG-TERM
SYMPTOMS OF COVID-19.
(a) Research.--The Secretary of Health and Human Services shall
expand the Chronic Conditions Data Warehouse research database of the
Centers for Medicare & Medicaid Services to collect data on items and
services furnished to individuals 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 PASC, for purposes of assessing the frequency at which
COVID-19 survivors are furnished such items and services.
(b) Authorization of Appropriations.--To carry out this section,
there is authorized to be appropriated $3,000,000 for fiscal year 2022,
which shall remain available until expended.
SEC. 7. PROGRAM TO SUPPORT LEGAL AND SOCIAL SERVICE ASSISTANCE FOR
INDIVIDUALS WITH PASC.
(a) In General.--The Secretary of Health and Human Services, acting
through the Administrator of the Administration for Community Living,
shall award grants or contracts to eligible entities for purposes of
establishing or expanding medical-legal partnerships, or increasing the
availability of legal assistance or social supports necessary, to
provide effective aid or support to individuals with PASC or related
post-viral illnesses and conditions who are seeking assistance in
obtaining or maintaining access to, or in legal matters relating to,
any of the following services, at minimal or no cost to the
individuals:
(1) The Social Security Disability Insurance program under
section 223 of the Social Security Act (42 U.S.C. 423).
(2) The supplemental security income program under title
XVI of the Social Security Act (42 U.S.C. 1381 et seq.).
(3) Survivors benefits under title II of the Social
Security Act (42 U.S.C. 401 et seq.).
(4) Housing matters.
(5) Access to medical care.
(6) Access to vocational rehabilitation services under
title I of the Rehabilitation Act of 1973 (29 U.S.C. 720 et
seq.).
(7) Access to assistive technology under the Assistive
Technology Act of 1998 (29 U.S.C. 3001 et seq.).
(8) Early intervention, specialized instruction, and
related services and accommodations for children provided under
parts B and C of the Individuals with Disabilities Education
Act (20 U.S.C. 1411 et seq.; 20 U.S.C. 1431 et seq.) and
section 504 of the Rehabilitation Act of 1973 (29 U.S.C. 794).
(9) The low-income home energy assistance program
established under the Low-Income Home Energy Assistance Act of
1981 (42 U.S.C. 8621 et seq.).
(10) Employment supports.
(11) Nutrition assistance.
(12) Other support services for low-income individuals and
people with disabilities (as defined in section 3 of the
Americans with Disabilities Act of 1990 (42 U.S.C. 12102)).
(b) Eligibility for Awards.--
(1) In general.--To be eligible to receive an award under
this section, an entity shall--
(A) be--
(i) a State, or an agency implementing the
State protection and advocacy system (as
defined in section 102 of the Developmental
Disabilities Assistance and Bill of Rights Act
of 2000 (42 U.S.C. 15002));
(ii) a nonprofit entity or a publicly
funded organization not acting in a
governmental capacity, such as a law school;
(iii) an Indian Tribe or Tribal
organization;
(iv) an urban Indian organization;
(v) a territory;
(vi) a health care provider with an
existing multi-disciplinary clinic or other
specialized program focused on serving
individuals with PASC, underserved communities,
or low-income patients, or with a demonstrated
intent to create such a program;
(vii) an entity providing legal services;
or
(viii) a consortium of entities described
in clauses (i) through (vii);
(B) agree to use the award for the purposes
described in subsection (c); and
(C) partner with at least one community-based
organization with a demonstrated history of serving
people with disabilities, including helping people with
disabilities access supportive services, or a
demonstrated history of serving impacted communities,
including limited-English proficient communities.
(2) Priority.--In making awards under subsection (a), the
Secretary shall give priority to entities described in
paragraph that certify in writing that any person providing
legal assistance through a program supported by the award--
(A)(i) has demonstrated expertise in providing
legal assistance to people with disabilities; or
(ii) is partnered with a person that has
demonstrated expertise described in clause (i); and
(B) has completed, or will complete, training in
connection with disability-related legal issues.
(c) Use of Funds.--An eligible entity receiving an award under this
section may use such award to--
(1) establish or expand medical-legal partnerships or other
cooperative efforts between community-based organizations,
medical and social service providers, and legal assistance
providers to provide legal assistance and help accessing or
maintaining social services for individuals with PASC;
(2) establish or expand efforts and projects to provide
legal assistance for individuals with PASC by organizations
with a demonstrated history of providing direct legal or
advocacy services on behalf of people with disabilities;
(3) provide technical assistance to organizations or
agencies for educating individuals with PASC or parents,
including foster parents, caring for children with PASC about
rights related to accommodations in employment, education, or
other matters as determined by the Secretary; and
(4) employ staff or educate current staff on assisting
individuals with PASC in obtaining health care, social
services, or legal services.
(d) Reporting.--Eligible entities receiving an award under this
section shall collect data and report information to the Secretary of
Health and Human Services in a manner prescribed by such Secretary.
(e) Evaluation.--Not later than 1 year after the date of enactment
of this Act, and annually thereafter, the Secretary of Health and Human
Services shall 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, which shall also be made
publicly available, outlining the number of individuals who sought
services offered by recipients of awards under this section and the
services provided. Such report shall include a summary of activities
conducted under the program under this section, and information broken
down by award recipient.
(f) Authorization of Appropriations.--
(1) In general.--There is authorized to be appropriated to
carry out this section $50,000,000 for each of fiscal years
2023 through 2027.
(2) Nonsupplantation.--Amounts made available under this
section shall be used to supplement and not supplant other
Federal, State, and local funds expended to further the purpose
of this section.
SEC. 8. DEFINITIONS.
In this Act:
(1) Indian tribe; tribal organization.--The terms ``Indian
Tribe'' and ``Tribal organization'' have the meanings given the
terms ``Indian tribe'' and ``tribal organization'' in section 4
of the Indian Self-Determination and Education Assistance Act
(25 U.S.C. 5304).
(2) PASC.--The term ``PASC'' means post-acute sequelae of
COVID-19, commonly referred to as ``long COVID''.
(3) Urban indian organization.--The term ``urban Indian
organization'' has the meaning given such term in section 4 of
the Indian Health Care Improvement Act (25 U.S.C. 1603).
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