I 
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 Representa-
tives 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’’. 
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SEC. 2. AUTHORIZATION TO FUND A PATIENT REGISTRY 
FOR RESEARCH ON LONG COVID AND RE-
LATED CONDITIONS. 
(a) IN GENERAL.—The Secretary of Health and 
Human Services (referred to in this Act as the ‘‘Sec-
retary’’), 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 sub-
section (a), activities described in this subsection shall in-
clude— 
(1) creating or maintaining a regularly updated 
patient registry of individuals with suspected or con-
firmed Long COVID and related conditions, includ-
ing information on— 
(A) symptoms that arise while an indi-
vidual 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 
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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 diag-
nosis of COVID–19 was not obtained and can-
not 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 diag-
nosis of, treatment for, and management of 
care with COVID–19, Long COVID, and re-
lated conditions; and 
(F) comorbidities, vaccination status, and 
demographics, including age, gender, race and 
ethnicity, geographic location, disability, and oc-
cupation of registry participants; 
(2) synthesis of information relating to individ-
uals experiencing Long COVID and related condi-
tions and other information available through the 
patient registry; 
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(3) dissemination of information to relevant 
Federal departments and agencies and patients par-
ticipating in the registry to inform treatment and 
policy related to COVID–19, Long COVID, and re-
lated conditions; 
(4) an assurance that the registry utilizes com-
mon 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 im-
pacted by high COVID–19 and Long COVID rates, 
communities affected by health disparities and in-
equities (including Indian Tribes and Tribal organi-
zations, urban Indian organizations, and people with 
disabilities), individuals with related conditions, 
health care providers, first responders, military serv-
ice 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. 
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(c) VOLUNTARY PARTICIPATION; PRIVACY PROTEC-
TIONS.— 
(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 in-
clude 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 estab-
lishment of the synthesized patient registry under sub-
section (b)(2), and annually thereafter, the Secretary shall 
submit a report that includes data, findings, and informa-
tion with respect to the status of the patient registry (in-
cluding 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. 
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SEC. 3. RESEARCH ON UNITED STATES HEALTH CARE SYS-
TEM’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 Con-
trol and Prevention, shall conduct or support research re-
lated to the United States health care system’s response 
to Long COVID, including with respect to— 
(1) the expansion and effectiveness of post-in-
fectious disease treatment, including— 
(A) identifying barriers to access for treat-
ment 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, oc-
cupation, and racial and ethnic disparities with 
respect to COVID–19 infection rates, severity 
and length of symptoms, associated diagnoses, 
and outcomes; and 
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(C) identifying trends associated with dif-
ferences in diagnosis and treatment of Long 
COVID and related conditions by demographic 
factors such as age, gender, geographic loca-
tion, disability, occupation, race, ethnicity, or 
other factors identified by the Secretary to pro-
mote 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 dis-
parities in COVID–19 infection rates, hos-
pitalizations, 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 
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$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 lin-
guistically appropriate and easily accessible to people with 
disabilities and people with limited English proficiency, in-
cluding information on— 
(1) the awareness, incidence, and short- and 
long-term health effects associated with COVID–19 
infection, including Long COVID associated dis-
ability; 
(2) illnesses related and often comorbid with 
Long COVID, which may include— 
(A) myalgic encephalomyelitis/chronic fa-
tigue syndrome; 
(B) fibromyalgia; 
(C) postural orthostatic tachycardia syn-
drome and other forms of dysautonomia; 
(D) autoimmune diseases associated with 
viral triggers; 
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(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 de-
termines appropriate; 
(3) the availability, as medically appropriate, of 
treatment options for Long COVID and related con-
ditions overlapping with Long COVID identified 
under paragraph (2); and 
(4) strategies for reducing the likelihood of de-
veloping Long COVID. 
(b) LONG
COVID PROVIDER
EDUCATION
PRO-
GRAM.—The Secretary, in consultation with representa-
tives from impacted communities and health care pro-
viders who treat such communities or individuals, shall de-
velop 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 man-
agement of Long COVID and related conditions for the 
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purpose of ensuring that health care providers remain in-
formed about current information on Long COVID and 
related conditions, including information on— 
(1) Long COVID symptoms such as cognitive, 
neurological, 
psychiatric, 
gastrointestinal, 
res-
piratory, 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 af-
fect adults, young adults, or children; and 
(8) other conditions as the Secretary deter-
mines appropriate. 
(c) CONSIDERATIONS.—In developing and dissemi-
nating information in subsections (a) and (b), the Sec-
retary shall ensure that— 
(1) guidance on Long COVID diagnostics, 
treatments, and care include demographic factors 
such as age, gender, geographic location, disability, 
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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 individ-
uals, are empowered to participate in protocol devel-
opment and outreach and education strategies. 
(d) DISSEMINATION
OF INFORMATION.—The Sec-
retary shall disseminate, in plain language and in a man-
ner that is culturally and linguistically appropriate and 
easily accessible to people with disabilities and individuals 
with limited English proficiency, information under sub-
sections (a) and (b), directly or through arrangements 
with intra-agency initiatives, nonprofit organizations, con-
sumer groups, Federally qualified health centers, institu-
tions 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 de-
fined 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. 
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SEC. 5. INTERAGENCY COORDINATION AND INFORMATION 
DISSEMINATION 
ON 
RIGHTS 
ASSOCIATED 
WITH LONG COVID. 
(a) IN GENERAL.—The Secretary shall convene rel-
evant agencies to develop information and resources to 
make available to the public and for dissemination to indi-
viduals and communities impacted by Long COVID and 
related conditions to raise awareness and provide edu-
cation 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 devel-
oping the information and resources under subsection (a), 
the Secretary— 
(1) shall collaborate with— 
(A) the Secretary of Labor and the Assist-
ant Secretary of Labor for Disability Employ-
ment Policy; 
(B) the Secretary of Education; 
(C) the Commissioner of the Social Secu-
rity Administration; 
(D) the Secretary of Veterans Affairs; 
(E) the heads of relevant agencies within 
the Department of Health and Human Services, 
including— 
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(i) the Director of the Centers for 
Disease Control and Prevention; 
(ii) the Director of the National Insti-
tutes of Health; 
(iii) the Administrator of the Centers 
for Medicare & Medicaid Services; 
(iv) the Administrator of the Adminis-
tration for Children and Families; and 
(v) the Administrator of the Adminis-
tration for Community Living; and 
(F) the heads of other Federal depart-
ments, agencies, or offices, as the Secretary de-
termines appropriate to carry out the activities 
described in this section; and 
(2) may consult with— 
(A) communities and professionals im-
pacted by high COVID–19 rates; 
(B) individuals with Long COVID and re-
lated conditions; 
(C) caregivers of individuals with Long 
COVID and related conditions; and 
(D) organizations and experts that rep-
resent the rights and interests of the groups de-
scribed in subparagraphs (A), (B), and (C). 
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(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 sub-
section (b) shall develop information and resources to in-
clude— 
(1) educational materials to school administra-
tors, counselors, educators, parents, coaches, school 
nurses, and other school staff about Long COVID 
and related conditions with clear guidance on appro-
priate 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 peo-
ple with disabilities related to Long COVID and re-
lated conditions, including strategies for how em-
ployers can support such individuals in the work-
place; and 
(3) guidance on Long COVID and related con-
ditions as a disability, including recommendations to 
streamline the process of applying for benefits 
through the Social Security Administration, includ-
ing guidance on evaluating Long COVID and related 
conditions for individuals under the age of 18, con-
tinuing disability reviews, and the payment of bene-
fits under part L of title I of the Omnibus Crime 
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Control and Safe Streets Act of 1968 (34 U.S.C. 
10281 et seq.). 
(d) DISSEMINATION
OF INFORMATION.—The Sec-
retary shall disseminate the information and resources de-
veloped 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 Assist-
ance 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 rep-
resent 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 re-
main available until expended. 
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SEC. 6. PROGRAM TO SUPPORT LEGAL AND SOCIAL SERV-
ICE ASSISTANCE FOR INDIVIDUALS WITH 
LONG COVID. 
(a) IN GENERAL.—The Secretary, acting through the 
Administrator of the Administration for Community Liv-
ing, shall award grants or contracts to eligible entities for 
purposes of establishing or expanding medical-legal part-
nerships, or increasing the availability of legal assistance 
or social supports necessary, to provide effective aid or 
support to individuals with Long COVID and related con-
ditions, 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 So-
cial Security Act (42 U.S.C. 401 et seq.). 
(4) Housing matters. 
(5) Access to medical care. 
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