II 

118TH CONGRESS 

1ST SESSION S. 801 

To address research on, and improve access to, supportive services for 

individuals with Long COVID. 

IN THE SENATE OF THE UNITED STATES 

MARCH 15, 2023 

Mr. KAINE (for himself, Mr. MARKEY, Ms. DUCKWORTH, Mr. BLUMENTHAL, 

Ms. SMITH, Mr. PADILLA, Mr. WHITEHOUSE, Ms. STABENOW, Mr. 

REED, Ms. KLOBUCHAR, and Mr. KING) 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. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Comprehensive Access 

5 to Resources and Education for Long COVID Act’’ or the 

6 ‘‘CARE for Long COVID Act’’. 


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1 SEC. 2. AUTHORIZATION TO FUND A PATIENT REGISTRY 

2 FOR RESEARCH ON LONG COVID AND RE3 LATED CONDITIONS. 

4 (a) IN GENERAL.—The Secretary of Health and 

5 Human Services (referred to in this Act as the ‘‘Sec6 retary’’), acting in coordination with the Patient-Centered 

7 Outcomes Research Institute established under section 

8 1181 of the Social Security Act (42 U.S.C. 1320e(b)), 

9 shall fund activities described in subsection (b) to improve 

10 treatment and outcomes for individuals with Long COVID 

11 and related conditions. 

12 (b) ACTIVITIES DESCRIBED.—For purposes of sub13 section (a), activities described in this subsection shall in14 clude— 

15 (1) creating or maintaining a regularly updated 

16 patient registry of individuals with suspected or con17 firmed Long COVID and related conditions, includ18 ing information on— 

19 (A) symptoms that arise while an indi20 vidual is initially infected with COVID–19 and 

21 that may resolve over time or extend beyond the 

22 resolution of the initial symptoms; 

23 (B) persistent symptoms that arise after 

24 an individual is initially infected with COVID– 

25 19 and that the clinician of such individual has 


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1 reason to suspect were related to the COVID– 

2 19 diagnosis; 

3 (C) symptoms that arise in an individual 

4 that may be related to COVID–19, but a diag5 nosis of COVID–19 was not obtained and can6 not be identified due to a lack of antibodies, 

7 false negative test results, or lack of access to 

8 timely testing; 

9 (D) treatments of individuals after primary 

10 diagnosis of COVID–19 and the effectiveness of 

11 such treatments; 

12 (E) any other relevant questions or issues 

13 related to individuals who experience a diag14 nosis of, treatment for, and management of 

15 care with COVID–19, Long COVID, and re16 lated conditions; and 

17 (F) comorbidities, vaccination status, and 

18 demographics, including age, gender, race and 

19 ethnicity, geographic location, disability, and oc20 cupation of registry participants; 

21 (2) synthesis of information relating to individ22 uals experiencing Long COVID and related condi23 tions and other information available through the 

24 patient registry; 


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1 (3) dissemination of information to relevant 

2 Federal departments and agencies and patients par3 ticipating in the registry to inform treatment and 

4 policy related to COVID–19, Long COVID, and re5 lated conditions; 

6 (4) an assurance that the registry utilizes com7 mon data elements and definitions for use in order 

8 to promote appropriate data sharing for ongoing and 

9 future research; and 

10 (5) outreach to, and inclusion in the patient 

11 registry, as appropriate, of individuals, including 

12 children and older adults, from communities im13 pacted by high COVID–19 and Long COVID rates, 

14 communities affected by health disparities and in15 equities (including Indian Tribes and Tribal organi16 zations, urban Indian organizations, and people with 

17 disabilities), individuals with related conditions, 

18 health care providers, first responders, military serv19 ice members, veterans, pregnant and lactating 

20 women, frontline workers who may be impacted by 

21 high COVID–19 and Long COVID rates, and health 

22 care providers from diverse disciplines that may 

23 treat individuals with COVID–19, Long COVID, 

24 and related conditions. 


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1 (c) VOLUNTARY PARTICIPATION; PRIVACY PROTEC2 TIONS.— 

3 (1) VOLUNTARY PARTICIPATION.—Participation 

4 in the registry described in subsection (b)(1) shall be 

5 voluntary, and a person creating, assisting in the 

6 creation of, or maintaining the registry shall not in7 clude in the registry information about an individual 

8 unless the individual consents to the inclusion of 

9 such information. 

10 (2) PRIVACY PROTECTIONS.—Information about 

11 an individual that is included in the registry shall be 

12 subject to all applicable privacy protections under 

13 Federal and State law. 

14 (d) REPORT.—Not later than 1 year after the estab15 lishment of the synthesized patient registry under sub16 section (b)(2), and annually thereafter, the Secretary shall 

17 submit a report that includes data, findings, and informa18 tion with respect to the status of the patient registry (in19 cluding progress, barriers, and issues) to Congress and the 

20 President. 

21 (e) AUTHORIZATION OF APPROPRIATIONS.—To carry 

22 out this section, there is authorized to be appropriated 

23 $30,000,000 for fiscal year 2024, which shall remain 

24 available until expended. 


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1 SEC. 3. RESEARCH ON UNITED STATES HEALTH CARE SYS2 TEM’S RESPONSE TO LONG COVID. 

3 (a) IN GENERAL.—The Secretary, in coordination 

4 with the Director of the Agency for Healthcare Research 

5 and Quality, the Director of the National Institutes of 

6 Health, and the Director of the Centers for Disease Con7 trol and Prevention, shall conduct or support research re8 lated to the United States health care system’s response 

9 to Long COVID, including with respect to— 

10 (1) the expansion and effectiveness of post-in11 fectious disease treatment, including— 

12 (A) identifying barriers to access for treat13 ment of COVID–19, Long COVID, and related 

14 conditions for veterans, older adults, people 

15 with disabilities, children and young adults, 

16 communities of color, underserved and rural 

17 communities, and other groups impacted by 

18 high rates of COVID–19, as determined by the 

19 Secretary; 

20 (B) evaluating and identifying potential 

21 gaps or other weaknesses that contribute to 

22 age, gender, geographic location, disability, oc23 cupation, and racial and ethnic disparities with 

24 respect to COVID–19 infection rates, severity 

25 and length of symptoms, associated diagnoses, 

26 and outcomes; and 


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1 (C) identifying trends associated with dif2 ferences in diagnosis and treatment of Long 

3 COVID and related conditions by demographic 

4 factors such as age, gender, geographic loca5 tion, disability, occupation, race, ethnicity, or 

6 other factors identified by the Secretary to pro7 mote health equity; and 

8 (2) conducting and supporting research to— 

9 (A) identify health care strategies that 

10 help mitigate age, gender, geographic location, 

11 disability, occupation, and racial and ethnic dis12 parities in COVID–19 infection rates, hos13 pitalizations, severity and length of symptoms, 

14 secondary illnesses, and outcomes; 

15 (B) identify health care-related factors 

16 contributing to such disparities in COVID–19 

17 infection rates, hospitalizations, severity and 

18 length of symptoms, secondary illnesses, and 

19 outcomes; and 

20 (C) provide recommendations on ensuring 

21 equity in diagnosis and access to quality post22 infectious treatments that may be advanced to 

23 mitigate such disparities. 

24 (b) AUTHORIZATION OF APPROPRIATIONS.—To carry 

25 out this section, there is authorized to be appropriated 


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1 $15,000,000 for fiscal year 2024, which shall remain 

2 available until expended. 

3 SEC. 4. EDUCATION AND DISSEMINATION OF INFORMATION 

4 ON LONG COVID. 

5 (a) LONG COVID PUBLIC EDUCATION PROGRAM.— 

6 The Secretary shall develop and disseminate to the public 

7 regularly updated information regarding Long COVID, in 

8 plain language and in a manner that is culturally and lin9 guistically appropriate and easily accessible to people with 

10 disabilities and people with limited English proficiency, in11 cluding information on— 

12 (1) the awareness, incidence, and short- and 

13 long-term health effects associated with COVID–19 

14 infection, including Long COVID associated dis15 ability; 

16 (2) illnesses related and often comorbid with 

17 Long COVID, which may include— 

18 (A) myalgic encephalomyelitis/chronic fa19 tigue syndrome; 

20 (B) fibromyalgia; 

21 (C) postural orthostatic tachycardia syn22 drome and other forms of dysautonomia; 

23 (D) autoimmune diseases associated with 

24 viral triggers; 


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1 (E) connective tissue diseases exacerbated 

2 or triggered by infections; 

3 (F) mast cell activation syndrome; 

4 (G) related conditions and illnesses that 

5 may affect adults, young adults, or children; 

6 and 

7 (H) other conditions, as the Secretary de8 termines appropriate; 

9 (3) the availability, as medically appropriate, of 

10 treatment options for Long COVID and related con11 ditions overlapping with Long COVID identified 

12 under paragraph (2); and 

13 (4) strategies for reducing the likelihood of de14 veloping Long COVID. 

15 (b) LONG COVID PROVIDER EDUCATION PRO16 GRAM.—The Secretary, in consultation with representa17 tives from impacted communities and health care pro18 viders who treat such communities or individuals, shall de19 velop and disseminate to health care providers, including 

20 by developing or improving continuing medical education 

21 programs that advance the education of such providers, 

22 information on Long COVID, recommended assessment 

23 tools, including how to assess patients’ functional capacity 

24 to support applications for disability benefits, and man25 agement of Long COVID and related conditions for the 


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1 purpose of ensuring that health care providers remain in2 formed about current information on Long COVID and 

3 related conditions, including information on— 

4 (1) Long COVID symptoms such as cognitive, 

5 neurological, psychiatric, gastrointestinal, res6 piratory, and cardiovascular symptoms; 

7 (2) myalgic encephalomyelitis/chronic fatigue 

8 syndrome and fibromyalgia; 

9 (3) postural orthostatic tachycardia syndrome 

10 and other forms of dysautonomia; 

11 (4) autoimmune diseases associated with viral 

12 triggers; 

13 (5) connective tissue diseases exacerbated or 

14 triggered by infections; 

15 (6) mast cell activation syndrome; 

16 (7) related conditions and illnesses that may af17 fect adults, young adults, or children; and 

18 (8) other conditions as the Secretary deter19 mines appropriate. 

20 (c) CONSIDERATIONS.—In developing and dissemi21 nating information in subsections (a) and (b), the Sec22 retary shall ensure that— 

23 (1) guidance on Long COVID diagnostics, 

24 treatments, and care include demographic factors 

25 such as age, gender, geographic location, disability, 


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1 occupation, race and ethnicity, and other factors 

2 identified by the Secretary to promote health equity; 

3 and 

4 (2) individuals with Long COVID and related 

5 conditions, and entities representing such individ6 uals, are empowered to participate in protocol devel7 opment and outreach and education strategies. 

8 (d) DISSEMINATION OF INFORMATION.—The Sec9 retary shall disseminate, in plain language and in a man10 ner that is culturally and linguistically appropriate and 

11 easily accessible to people with disabilities and individuals 

12 with limited English proficiency, information under sub13 sections (a) and (b), directly or through arrangements 

14 with intra-agency initiatives, nonprofit organizations, con15 sumer groups, Federally qualified health centers, institu16 tions of higher learning (as defined in section 101 of the 

17 Higher Education Act of 1965 (20 U.S.C. 1001)), local 

18 educational agencies or State educational agencies (as de19 fined in section 8101 of the Elementary and Secondary 

20 Education Act of 1965 (20 U.S.C. 7801)), or Federal, 

21 State, Tribal, or local public private partnerships. 

22 (e) AUTHORIZATION OF APPROPRIATIONS.—To carry 

23 out this section, there is authorized to be appropriated 

24 $30,000,000 for each of fiscal years 2024 through 2026, 

25 which shall remain available until expended. 


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1 SEC. 5. INTERAGENCY COORDINATION AND INFORMATION 

2 DISSEMINATION ON RIGHTS ASSOCIATED 

3 WITH LONG COVID. 

4 (a) IN GENERAL.—The Secretary shall convene rel5 evant agencies to develop information and resources to 

6 make available to the public and for dissemination to indi7 viduals and communities impacted by Long COVID and 

8 related conditions to raise awareness and provide edu9 cation on the impact Long COVID and related conditions 

10 may have on rights associated with employment, disability 

11 status, and education afforded under Federal and State 

12 law. 

13 (b) COLLABORATION AND CONSULTATION.—In devel14 oping the information and resources under subsection (a), 

15 the Secretary— 

16 (1) shall collaborate with— 

17 (A) the Secretary of Labor and the Assist18 ant Secretary of Labor for Disability Employ19 ment Policy; 

20 (B) the Secretary of Education; 

21 (C) the Commissioner of the Social Secu22 rity Administration; 

23 (D) the Secretary of Veterans Affairs; 

24 (E) the heads of relevant agencies within 

25 the Department of Health and Human Services, 

26 including— 


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1 (i) the Director of the Centers for 

2 Disease Control and Prevention; 

3 (ii) the Director of the National Insti4 tutes of Health; 

5 (iii) the Administrator of the Centers 

6 for Medicare & Medicaid Services; 

7 (iv) the Administrator of the Adminis8 tration for Children and Families; and 

9 (v) the Administrator of the Adminis10 tration for Community Living; and 

11 (F) the heads of other Federal depart12 ments, agencies, or offices, as the Secretary de13 termines appropriate to carry out the activities 

14 described in this section; and 

15 (2) may consult with— 

16 (A) communities and professionals im17 pacted by high COVID–19 rates; 

18 (B) individuals with Long COVID and re19 lated conditions; 

20 (C) caregivers of individuals with Long 

21 COVID and related conditions; and 

22 (D) organizations and experts that rep23 resent the rights and interests of the groups de24 scribed in subparagraphs (A), (B), and (C). 


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1 (c) INFORMATION AND RESOURCES DEVELOPED.— 

2 Not later than 1 year after the date of enactment of this 

3 Act, and annually thereafter, the entities described in sub4 section (b) shall develop information and resources to in5 clude— 

6 (1) educational materials to school administra7 tors, counselors, educators, parents, coaches, school 

8 nurses, and other school staff about Long COVID 

9 and related conditions with clear guidance on appro10 priate academic, social, and emotional supports and 

11 services, and the rights of students with disabilities, 

12 available to students and families; 

13 (2) guidance for employers on the rights of peo14 ple with disabilities related to Long COVID and re15 lated conditions, including strategies for how em16 ployers can support such individuals in the work17 place; and 

18 (3) guidance on Long COVID and related con19 ditions as a disability, including recommendations to 

20 streamline the process of applying for benefits 

21 through the Social Security Administration, includ22 ing guidance on evaluating Long COVID and related 

23 conditions for individuals under the age of 18, con24 tinuing disability reviews, and the payment of bene25 fits under part L of title I of the Omnibus Crime 


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1 Control and Safe Streets Act of 1968 (34 U.S.C. 

2 10281 et seq.). 

3 (d) DISSEMINATION OF INFORMATION.—The Sec4 retary shall disseminate the information and resources de5 veloped under subsection (c) to— 

6 (1) States or State agencies implementing the 

7 State protection and advocacy system (as defined in 

8 section 102 of the Developmental Disabilities Assist9 ance and Bill of Rights Act of 2000 (42 U.S.C. 

10 15002)); 

11 (2) State agencies on aging or area agencies on 

12 aging (as such terms are defined in section 102 of 

13 the Older Americans Act of 1965 (42 U.S.C. 3002)); 

14 (3) organizations and experts that represent 

15 workers’ rights and education; and 

16 (4) other organizations and experts that rep17 resent the rights and interests of individuals with 

18 Long COVID and related conditions. 

19 (e) APPROPRIATIONS.—To carry out this section, 

20 there is authorized to be appropriated $30,000,000 for 

21 each of fiscal years 2024 through 2026, which shall re22 main available until expended. 


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1 SEC. 6. PROGRAM TO SUPPORT LEGAL AND SOCIAL SERV2 ICE ASSISTANCE FOR INDIVIDUALS WITH 

3 LONG COVID. 

4 (a) IN GENERAL.—The Secretary, acting through the 

5 Administrator of the Administration for Community Liv6 ing, shall award grants or contracts to eligible entities for 

7 purposes of establishing or expanding medical-legal part8 nerships, or increasing the availability of legal assistance 

9 or social supports necessary, to provide effective aid or 

10 support to individuals with Long COVID and related con11 ditions, and their caregivers, who are seeking assistance 

12 in obtaining or maintaining access to, or in legal matters 

13 relating to, any of the following services, at minimal or 

14 no cost to the individuals: 

15 (1) The Social Security Disability Insurance 

16 program under section 223 of the Social Security 

17 Act (42 U.S.C. 423). 

18 (2) The supplemental security income program 

19 under title XVI of the Social Security Act (42 

20 U.S.C. 1381 et seq.). 

21 (3) Survivors benefits under title II of the So22 cial Security Act (42 U.S.C. 401 et seq.). 

23 (4) Housing matters. 

24 (5) Access to medical care. 


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1 (6) Access to vocational rehabilitation services 

2 under title I of the Rehabilitation Act of 1973 (29 

3 U.S.C. 720 et seq.). 

4 (7) Access to assistive technology under the As5 sistive Technology Act of 1998 (29 U.S.C. 3001 et 

6 seq.). 

7 (8) Early intervention, specialized instruction, 

8 and related services and accommodations for chil9 dren provided under parts B and C of the Individ10 uals with Disabilities Education Act (20 U.S.C. 

11 1411 et seq.; 20 U.S.C. 1431 et seq.) and section 

12 504 of the Rehabilitation Act of 1973 (29 U.S.C. 

13 794). 

14 (9) The low-income home energy assistance pro15 gram established under the Low-Income Home En16 ergy Assistance Act of 1981 (42 U.S.C. 8621 et 

17 seq.). 

18 (10) Employment supports. 

19 (11) Nutrition assistance. 

20 (12) Traumatic brain injury supports. 

21 (13) Other support services for low-income indi22 viduals and people with disabilities (as defined in 

23 section 3 of the Americans with Disabilities Act of 

24 1990 (42 U.S.C. 12102)). 

25 (b) ELIGIBILITY FOR AWARDS.— 


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1 (1) IN GENERAL.—To be eligible to receive an 

2 award under this section, an entity shall— 

3 (A) be— 

4 (i) a State, or an agency imple5 menting the State protection and advocacy 

6 system (as defined in section 102 of the 

7 Developmental Disabilities Assistance and 

8 Bill of Rights Act of 2000 (42 U.S.C. 

9 15002)); 

10 (ii) a State agency or area agency on 

11 aging (as such terms are defined in section 

12 102 of the Older Americans Act of 1965 

13 (42 U.S.C. 3002)); 

14 (iii) a nonprofit entity or a publicly 

15 funded organization not acting in a govern16 mental capacity, such as a law school; 

17 (iv) an Indian Tribe or Tribal organi18 zation; 

19 (v) an urban Indian organization; 

20 (vi) a territory; 

21 (vii) a health care provider with an 

22 existing multi-disciplinary clinic or other 

23 specialized program focused on serving in24 dividuals with Long COVID, underserved 

25 communities, or low-income patients, or 


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1 with a demonstrated intent to create such 

2 a program; 

3 (viii) an entity providing legal serv4 ices; or 

5 (ix) a consortium of entities described 

6 in clauses (i) through (viii); 

7 (B) agree to use the award for the pur8 poses described in subsection (c); and 

9 (C) partner with at least one community10 based organization with a demonstrated history 

11 of serving people with disabilities, including 

12 helping people with disabilities access sup13 portive services, or a demonstrated history of 

14 serving impacted communities, including lim15 ited-English proficient communities. 

16 (2) PRIORITY.—In making awards under sub17 section (a), the Secretary shall give priority to enti18 ties described in paragraph (1) that certify in writ19 ing that any person providing legal assistance 

20 through a program supported by the award— 

21 (A)(i) has demonstrated expertise in pro22 viding legal assistance to people with disabil23 ities; or 


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1 (ii) is partnered with a person or organiza2 tion that has demonstrated expertise described 

3 in clause (i); and 

4 (B) has completed, or will complete, train5 ing in connection with disability-related legal 

6 issues. 

7 (c) USE OF FUNDS.—An eligible entity receiving an 

8 award under this section may use such award to— 

9 (1) establish or expand medical-legal partner10 ships or other cooperative efforts between commu11 nity-based organizations, medical and social service 

12 providers, and legal assistance providers to provide 

13 legal assistance and help accessing or maintaining 

14 social services for individuals with Long COVID; 

15 (2) establish or expand efforts and projects to 

16 provide legal assistance for individuals with Long 

17 COVID by organizations with a demonstrated his18 tory of providing direct legal or advocacy services on 

19 behalf of people with disabilities; 

20 (3) provide technical assistance to organizations 

21 or agencies for educating individuals with Long 

22 COVID, caregivers, and parents, including foster 

23 parents, caring for children with Long COVID about 

24 rights related to accommodations in employment, 


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1 education, or other matters as determined by the 

2 Secretary; and 

3 (4) employ staff or educate current staff on as4 sisting individuals with Long COVID in obtaining 

5 health care, social services, or legal services. 

6 (d) REPORTING.—Eligible entities receiving an award 

7 under this section shall collect data and report information 

8 to the Secretary of Health and Human Services in a man9 ner prescribed by such Secretary. 

10 (e) EVALUATION.—Not later than 1 year after the 

11 date of enactment of this Act, and annually thereafter, 

12 the Secretary of Health and Human Services shall submit 

13 a report to the Committee on Health, Education, Labor, 

14 and Pensions of the Senate and the Committee on Energy 

15 and Commerce of the House of Representatives, which 

16 shall also be made publicly available, outlining the number 

17 of individuals who sought services offered by recipients of 

18 awards under this section and the services provided. Such 

19 report shall include a summary of activities conducted 

20 under the program under this section, and information 

21 broken down by award recipient. 

22 (f) AUTHORIZATION OF APPROPRIATIONS.— 

23 (1) IN GENERAL.—There is authorized to be 

24 appropriated to carry out this section $50,000,000 

25 for each of fiscal years 2024 through 2028. 


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1 (2) NONSUPPLANTATION.—Amounts made 

2 available under this section shall be used to supple3 ment and not supplant other Federal, State, and 

4 local funds expended to further the purpose of this 

5 section. 

6 SEC. 7. DEFINITIONS. 

7 In this Act: 

8 (1) INDIAN TRIBE.—The terms ‘‘Indian Tribe’’ 

9 has the meaning given the term ‘‘Indian tribe’’ in 

10 section 102 of the Federally Recognized Indian 

11 Tribe List Act of 1994 (25 U.S.C. 5130). 

12 (2) LONG COVID.—The term ‘‘Long COVID’’ 

13 means health conditions that may result, directly or 

14 indirectly, from COVID–19. 

15 (3) URBAN INDIAN ORGANIZATION.—The term 

16 ‘‘urban Indian organization’’ has the meaning given 

17 such term in section 4 of the Indian Health Care 

18 Improvement Act (25 U.S.C. 1603). 

19 (4) TRIBAL ORGANIZATION.—The term ‘‘Tribal 

20 organization’’ means the recognized governing body 

21 of any Indian Tribe; any legally established organi22 zation of Indians which is controlled, sanctioned, or 

23 chartered by such governing body or which is demo24 cratically elected by the adult members of the Indian 

25 community to be served by such organization and 


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1 which includes the maximum participation of Indi2 ans in all phases of its activities: Provided, That in 

3 any case where a contract is let or grant made to 

4 an organization to perform services benefitting more 

5 than one Indian Tribe, the approval of each such In6 dian Tribe shall be a prerequisite to the letting or 

7 making of such contract or grant 

Æ 


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