Comprehensive Access to Resources and Education for Long COVID Act or the CARE for Long COVID Act
This bill requires research, education, and other activities to support individuals who have Long COVID or related conditions that may result directly, or indirectly, from COVID-19 infection.
The Department of Health and Human Services (HHS) must support a voluntary patient registry to collect information about individuals with Long COVID and related conditions, such as their symptoms, treatments, and demographic characteristics. HHS must coordinate with the Patient-Centered Outcomes Research Institute on the registry.
HHS must also conduct or support research along with other agencies on how the U.S. health care system responds to Long COVID and related conditions. This includes research on the effectiveness of treatments and strategies to mitigate disparities in health outcomes.
In addition, HHS must (1) educate the public and health care providers about treatments for, conditions associated with, and other aspects of Long COVID and related conditions; and (2) disseminate information and resources on how Long COVID affects rights associated with employment, disability status, and education.
Last, the Administration for Community Living must award grants to or enter contracts with states, health care providers, legal services providers, and other eligible entities for expanding access to legal assistance for individuals with Long COVID and related conditions, including assistance with obtaining Social Security and other benefits and accessing medical care and services.
[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1616 Introduced in House (IH)]
<DOC>
118th CONGRESS
1st Session
H. R. 1616
To address research on, and improve access to, supportive services for
individuals with Long COVID.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
March 17, 2023
Mr. Beyer (for himself and Mr. Bergman) introduced the following bill;
which was referred to the Committee on Energy and Commerce
_______________________________________________________________________
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 A 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''), acting in coordination
with the Patient-Centered Outcomes Research Institute established 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 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 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, disability, and
occupation of registry participants;
(2) synthesis of information relating to individuals
experiencing Long COVID and related conditions and other
information available through the patient registry;
(3) dissemination of information to relevant Federal
departments and agencies and patients participating in the
registry to inform treatment and policy related to COVID-19,
Long COVID, and related conditions;
(4) an assurance that the 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 patient registry, as
appropriate, of individuals, including children and older
adults, from communities impacted by high COVID-19 and Long
COVID rates, communities affected by health disparities and
inequities (including Indian Tribes and Tribal organizations,
urban Indian organizations, and people with disabilities),
individuals with related conditions, health care providers,
first responders, military service members, veterans, pregnant
and lactating women, frontline workers who may be 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 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
synthesized 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.
(e) Authorization of Appropriations.--To carry out this section,
there is authorized to be appropriated $30,000,000 for fiscal year
2024, which shall remain available until expended.
SEC. 3. RESEARCH ON UNITED STATES HEALTH CARE SYSTEM'S RESPONSE TO LONG
COVID.
(a) In General.--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 Long
COVID, including with respect to--
(1) the expansion and effectiveness of post-infectious
disease treatment, including--
(A) identifying barriers to access for treatment of
COVID-19, Long COVID, and related 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,
associated diagnoses, and outcomes; and
(C) identifying trends associated with differences
in diagnosis and treatment of Long COVID and related
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.
(b) Authorization of Appropriations.--To carry out this section,
there is authorized to be appropriated $15,000,000 for fiscal year
2024, which shall remain available until expended.
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 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, including
Long COVID associated disability;
(2) illnesses related and often comorbid with Long COVID,
which may include--
(A) myalgic encephalomyelitis/chronic fatigue
syndrome;
(B) fibromyalgia;
(C) postural orthostatic tachycardia syndrome and
other forms of dysautonomia;
(D) autoimmune diseases associated with viral
triggers;
(E) connective tissue diseases exacerbated or
triggered by infections;
(F) mast cell activation syndrome;
(G) related conditions and illnesses that may
affect adults, young adults, or children; and
(H) other conditions, as the Secretary determines
appropriate;
(3) the availability, as medically appropriate, of
treatment options for Long COVID and related conditions
overlapping with Long COVID identified under 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, including how to assess patients' functional capacity
to support applications for disability benefits, 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, including information on--
(1) Long COVID 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 Long COVID 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 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 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, 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.
(e) Authorization of Appropriations.--To carry out this section,
there is authorized to be appropriated $30,000,000 for each of fiscal
years 2024 through 2026, which shall remain available until expended.
SEC. 5. INTERAGENCY COORDINATION AND INFORMATION DISSEMINATION ON
RIGHTS ASSOCIATED WITH LONG COVID.
(a) In General.--The Secretary shall convene relevant agencies to
develop information and resources to make available to the public and
for dissemination to individuals and communities impacted by Long COVID
and related conditions to raise awareness and provide education on the
impact Long COVID and related 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--
(1) shall collaborate with--
(A) the Secretary of Labor and the Assistant
Secretary of Labor for Disability Employment Policy;
(B) the Secretary of Education;
(C) the Commissioner of the Social Security
Administration;
(D) the Secretary of Veterans Affairs;
(E) the heads of relevant agencies within the
Department of Health and Human Services, including--
(i) the Director of the Centers for Disease
Control and Prevention;
(ii) the Director of the National
Institutes of Health;
(iii) the Administrator of the Centers for
Medicare & Medicaid Services;
(iv) the Administrator of the
Administration for Children and Families; and
(v) the Administrator of the Administration
for Community Living; and
(F) the heads of 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 professionals impacted by high
COVID-19 rates;
(B) individuals with Long COVID and related
conditions;
(C) caregivers of individuals with Long COVID and
related conditions; and
(D) organizations and experts that represent the
rights and interests of the groups described in
subparagraphs (A), (B), and (C).
(c) Information and Resources Developed.--Not later than 1 year
after the date of enactment of this Act, and annually thereafter, 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 Long COVID and related 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 Long COVID and related conditions,
including strategies for how employers can support such
individuals in the workplace; and
(3) guidance on Long COVID and related conditions as a
disability, including recommendations to streamline the process
of applying for benefits through the Social Security
Administration, including guidance on evaluating Long COVID and
related 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) Dissemination of Information.--The Secretary shall disseminate
the information and resources developed under subsection (c) to--
(1) States or State agencies 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));
(2) State agencies on aging or area agencies on aging (as
such terms are defined in section 102 of the Older Americans
Act of 1965 (42 U.S.C. 3002));
(3) organizations and experts that represent workers'
rights and education; and
(4) other organizations and experts that represent the
rights and interests of individuals with Long COVID and related
conditions.
(e) Appropriations.--To carry out this section, there is authorized
to be appropriated $30,000,000 for each of fiscal years 2024 through
2026, which shall remain available until expended.
SEC. 6. PROGRAM TO SUPPORT LEGAL AND SOCIAL SERVICE ASSISTANCE FOR
INDIVIDUALS WITH LONG COVID.
(a) In General.--The Secretary, 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 Long COVID and related conditions, and
their caregivers, 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) Traumatic brain injury supports.
(13) 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 State agency or area agency on aging
(as such terms are defined in section 102 of
the Older Americans Act of 1965 (42 U.S.C.
3002));
(iii) a nonprofit entity or a publicly
funded organization not acting in a
governmental capacity, such as a law school;
(iv) an Indian Tribe or Tribal
organization;
(v) an urban Indian organization;
(vi) a territory;
(vii) a health care provider with an
existing multi-disciplinary clinic or other
specialized program focused on serving
individuals with Long COVID, underserved
communities, or low-income patients, or with a
demonstrated intent to create such a program;
(viii) an entity providing legal services;
or
(ix) a consortium of entities described in
clauses (i) through (viii);
(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 (1) 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 or organization
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 Long COVID;
(2) establish or expand efforts and projects to provide
legal assistance for individuals with Long COVID 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 Long COVID, caregivers,
and parents, including foster parents, caring for children with
Long COVID 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 Long COVID 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
2024 through 2028.
(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. 7. DEFINITIONS.
In this Act:
(1) Indian tribe.--The terms ``Indian Tribe'' has the
meaning given the term ``Indian tribe'' in section 102 of the
Federally Recognized Indian Tribe List Act of 1994 (25 U.S.C.
5130).
(2) Long covid.--The term ``Long COVID'' means health
conditions that may result, directly or indirectly, from COVID-
19.
(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).
(4) Tribal organization.--The term ``Tribal organization''
means the recognized governing body of any Indian Tribe; any
legally established organization of Indians which is
controlled, sanctioned, or chartered by such governing body or
which is democratically elected by the adult members of the
Indian community to be served by such organization and which
includes the maximum participation of Indians in all phases of
its activities: Provided, That in any case where a contract is
let or grant made to an organization to perform services
benefitting more than one Indian Tribe, the approval of each
such Indian Tribe shall be a prerequisite to the letting or
making of such contract or grant.
<all>
Introduced in House
Introduced in House
Referred to the House Committee on Energy and Commerce.
Referred to the Subcommittee on Health.
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