II 

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. 

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 RESEARCH OF THE 

2 LONG-TERM SYMPTOMS OF COVID–19 BY THE 

3 PATIENT-CENTERED OUTCOMES RESEARCH 

4 TRUST FUND. 

5 (a) IN GENERAL.—The Patient-Centered Outcomes 

6 Research Trust Fund under section 1181 of the Social Se7 curity Act (42 U.S.C. 1320e(b)) shall fund activities de8 scribed in subsection (b) to improve treatment and out9 comes for individuals with PASC. 

10 (b) ACTIVITIES DESCRIBED.—For purposes of sub11 section (a), activities described in this subsection shall in12 clude— 

13 (1) prior to creating a patient registry described 

14 in paragraph (2)— 

15 (A) surveying existing patient registries 

16 that include individuals experiencing PASC and 

17 other relevant chronic disease or health reg18 istries; and 

19 (B) identifying common data elements and 

20 definitions for use, in order to promote appro21 priate data sharing for ongoing and future re22 search; 

23 (2) creating a patient registry, informed by the 

24 survey described in paragraph (1), for individuals 

25 with suspected or confirmed PASC and related post26 viral illnesses or conditions— 


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1 (A) with information that is culturally and 

2 linguistically appropriate and easily accessible 

3 to people with disabilities, and which may in4 clude— 

5 (i) symptoms that arise while an indi6 vidual is initially infected with COVID–19 

7 and that may resolve over time or extend 

8 beyond the resolution of the initial symp9 toms; 

10 (ii) persistent symptoms that arise 

11 after an individual is initially infected with 

12 COVID–19 and that the clinician of such 

13 individual has reason to suspect were re14 lated to the COVID–19 diagnosis; 

15 (iii) symptoms that arise in an indi16 vidual that may be related to COVID–19 

17 but a diagnosis of COVID–19 was not ob18 tained and cannot be identified due to a 

19 lack of antibodies, false negative test re20 sults, or lack of access to timely testing; 

21 (iv) treatments of individuals after 

22 primary diagnosis of COVID–19 and the 

23 effectiveness of such treatments; and 

24 (v) any other relevant questions or 

25 issues related to individuals who experience 


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1 a diagnosis of, treatment for, and manage2 ment of care with COVID–19, PASC, or 

3 related post-viral illnesses; 

4 (B) that collects information regarding co5 morbidities, vaccination status, and demo6 graphics, including age, gender, race and eth7 nicity, geographic location, disability, and occu8 pation of registry participants; 

9 (C) that synthesizes information relating 

10 to individuals experiencing PASC or related 

11 post-viral illnesses or conditions from the survey 

12 described in paragraph (1) and other informa13 tion available through the patient registry; and 

14 (D) that disseminates information to rel15 evant Federal departments and agencies and 

16 patients participating in the registry to inform 

17 treatment and policy related to COVID–19, 

18 PASC, or related post-viral illnesses and condi19 tions; and 

20 (3) outreach to, and inclusion (as appropriate) 

21 of, individuals, including children and older adults, 

22 from communities impacted by high COVID–19 

23 rates, communities affected by health disparities and 

24 inequities, including Indian Tribes and Tribal orga25 nizations, urban Indian organizations, people with 


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1 disabilities, individuals with related post-viral ill2 nesses or conditions, health care providers, first re3 sponders, and frontline workers who may be im4 pacted by high COVID–19 rates, and health care 

5 providers from diverse disciplines that may treat in6 dividuals with COVID–19, PASC, or related post7 viral illnesses and conditions. 

8 (c) PRIVACY PROTECTIONS.—Participation in the 

9 registry described in subsection (b)(2) shall be voluntary 

10 and personal and health information of participants, in11 cluding information voluntarily submitted through the reg12 istry, shall be subject to all applicable privacy protections 

13 under Federal or 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 Patient-Cen17 tered Outcomes Research Institute shall submit data, find18 ings, and information with respect to the status of the pa19 tient registry (including progress, barriers, and issues) to 

20 Congress and the 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 2023, 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 PASC. 

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

4 Human Services (referred to in this Act as the ‘‘Sec5 retary’’), in coordination with the Director of the Agency 

6 for Healthcare Research and Quality, the Director of the 

7 National Institutes of Health, and the Director of the Cen8 ters for Disease Control and Prevention, shall conduct or 

9 support research related to the United States health care 

10 system’s response to PASC, including with respect to— 

11 (1) the expansion and efficacy of post-infectious 

12 disease treatment, including— 

13 (A) identifying obstacles to access for 

14 treatment of COVID–19, PASC, or related 

15 post-viral illnesses and conditions for veterans, 

16 older adults, people with disabilities, children 

17 and young adults, communities of color, under18 served and rural communities, and other groups 

19 impacted by high rates of COVID–19, as deter20 mined by the Secretary; 

21 (B) evaluating and identifying potential 

22 gaps or other weaknesses that contribute to 

23 age, gender, geographic location, disability, oc24 cupation, and racial and ethnic disparities with 

25 respect to COVID–19 infection rates, severity 

26 and length of symptoms, and outcomes; and 


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

3 and related post-viral illnesses and conditions 

4 by demographic factors such as age, gender, ge5 ographic location, disability, occupation, race, 

6 ethnicity, or other factors identified by the Sec7 retary to promote 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, going forward. 

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 2023, which shall remain 

2 available until expended. 

3 SEC. 4. EDUCATION AND DISSEMINATION OF INFORMATION 

4 ON PASC. 

5 (a) POST-ACUTE SEQUELAE OF COVID–19 (PASC) 

6 PUBLIC EDUCATION PROGRAM.—The Secretary, acting 

7 through the Director of the Centers for Disease Control 

8 and Prevention, shall develop and disseminate to the pub9 lic information regarding PASC, in plain language and in 

10 a manner that is culturally and linguistically appropriate 

11 and easily accessible to people with disabilities and people 

12 with limited English proficiency, including information 

13 on— 

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

15 long-term health effects associated with COVID–19 

16 infection; 

17 (2) illnesses related and often comorbid with 

18 PASC, which may include— 

19 (A) myalgic encephalomyelitis/chronic fa20 tigue syndrome and fibromyalgia; 

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

23 (C) autoimmune diseases associated with 

24 viral triggers; 


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1 (D) connective tissue diseases exacerbated 

2 or triggered by infections; 

3 (E) mast cell activation syndrome; 

4 (F) related conditions and illnesses that 

5 may affect adults, young adults, or children; 

6 and 

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

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

10 treatment options for PASC and related post-viral 

11 illnesses and conditions overlapping with PASC iden12 tified under paragraph (2). 

13 (b) POST-ACUTE SEQUELAE OF COVID–19 (PASC) 

14 PROVIDER EDUCATION PROGRAM.—The Secretary, acting 

15 through the Director of the Centers for Disease Control 

16 and Prevention, shall, in consultation with representatives 

17 from impacted communities and health care providers who 

18 treat these communities or individuals, develop and dis19 seminate to health care providers information on PASC, 

20 recommended assessment tools, and management of PASC 

21 and related conditions for the purpose of ensuring that 

22 health care providers remain informed about current infor23 mation on such emerging illness and related post-infec24 tious illnesses, which have been shown to be closely related 

25 to PASC, including information on— 


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1 (1) PASC symptoms such as cognitive, neuro2 logical, psychiatric, gastrointestinal, respiratory, and 

3 cardiovascular symptoms; 

4 (2) myalgic encephalomyelitis/chronic fatigue 

5 syndrome and fibromyalgia; 

6 (3) postural orthostatic tachycardia syndrome 

7 and other forms of dysautonomia; 

8 (4) autoimmune diseases associated with viral 

9 triggers; 

10 (5) connective tissue diseases exacerbated or 

11 triggered by infections; 

12 (6) mast cell activation syndrome; 

13 (7) related conditions and illnesses that may af14 fect adults, young adults, or children; and 

15 (8) other conditions as the Secretary deter16 mines appropriate. 

17 (c) CONSIDERATIONS.—In developing and dissemi18 nating information in subsections (a) and (b), the Sec19 retary shall ensure that— 

20 (1) guidance on PASC diagnostics, treatments, 

21 and care include demographic factors such as age, 

22 gender, geographic location, disability, occupation, 

23 race and ethnicity, and other factors identified by 

24 the Secretary to promote health equity; and 


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1 (2) individuals with PASC or related post-viral 

2 illnesses and conditions, and entities representing 

3 such individuals, are empowered to participate in 

4 protocol development and outreach and education 

5 strategies. 

6 (d) DISSEMINATION OF INFORMATION.—The Sec7 retary shall disseminate, in plain language and in a man8 ner that is culturally and linguistically appropriate and 

9 easily accessible to people with disabilities and individuals 

10 with limited English proficiency, information under sub11 sections (a) and (b), directly or through arrangements 

12 with intra-agency initiatives, nonprofit organizations, con13 sumer groups, institutions of higher learning (as defined 

14 in section 101 of the Higher Education Act of 1965 (20 

15 U.S.C. 1001)), local educational agencies or State edu16 cational agencies (as defined in section 8101 of the Ele17 mentary and Secondary Education Act of 1965 (20 U.S.C. 

18 7801)), or Federal, State, Tribal, or local public private 

19 partnerships. 

20 (e) AUTHORIZATION OF APPROPRIATIONS.—To carry 

21 out this section, there is authorized to be appropriated 

22 $30,000,000 for each of fiscal years 2023 through 2025, 

23 which shall remain available until expended. 


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1 SEC. 5. INTERAGENCY COORDINATION ON PUBLIC EN2 GAGEMENT AND INFORMATION DISSEMINA3 TION ON PASC. 

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

5 Human Services shall convene relevant agencies to develop 

6 information and resources to make available to the public 

7 and for dissemination to individuals and communities im8 pacted by PASC and related post-viral illness and condi9 tions to raise awareness and provide education on the im10 pact PASC or related post-viral illness and conditions may 

11 have on rights associated with employment, disability sta12 tus, and education afforded under Federal and State law. 

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

15 the Secretary of Health and Human Services— 

16 (1) shall collaborate with— 

17 (A) the Department of Labor, including 

18 the Office of Disability Employment Policy of 

19 the Department of Labor; 

20 (B) the Department of Education; 

21 (C) the Social Security Administration; 

22 (D) relevant agencies within the Depart23 ment of Health and Human Services, includ24 ing— 

25 (i) the Centers for Disease Control 

26 and Prevention; 


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1 (ii) the National Institutes of Health; 

2 (iii) the Centers for Medicare & Med3 icaid Services; 

4 (iv) the Administration for Children 

5 and Families; and 

6 (v) the Administration on Community 

7 Living; and 

8 (E) other Federal departments, agencies, 

9 or offices, as the Secretary determines appro10 priate to carry out the activities described in 

11 this section; and 

12 (2) may consult with— 

13 (A) communities and professions impacted 

14 by high COVID–19 rates; 

15 (B) individuals with PASC or related post16 viral illnesses and conditions; and 

17 (C) organizations and experts that rep18 resent the rights and interests of the groups de19 scribed in subparagraphs (A) and (B). 

20 (c) INFORMATION AND RESOURCES DEVELOPED.— 

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

22 Act, the entities described in subsection (b) shall develop 

23 information and resources to include— 

24 (1) educational materials to school administra25 tors, counselors, educators, parents, coaches, school 


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1 nurses, and other school staff about PASC and re2 lated post-viral illnesses and conditions with clear 

3 guidance on appropriate academic, social, and emo4 tional supports and services, and the rights of stu5 dents with disabilities, available to students and 

6 families; 

7 (2) guidance for employers on the rights of peo8 ple with disabilities related to PASC and related 

9 post-viral illnesses and conditions; and 

10 (3) guidance on PASC and related post-viral ill11 nesses and conditions as a disability, including rec12 ommendations to streamline the process of applying 

13 for benefits through the Social Security Administra14 tion, including guidance on evaluating PASC and re15 lated post-viral illnesses and conditions for individ16 uals under the age of 18, continuing disability re17 views, and the payment of benefits under part L of 

18 title I of the Omnibus Crime Control and Safe 

19 Streets Act of 1968 (34 U.S.C. 10281 et seq.). 

20 (d) APPROPRIATIONS.—To carry out this section, 

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

22 each of fiscal years 2023 through 2025, which shall re23 main available until expended. 


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1 SEC. 6. RESEARCH WITH RESPECT TO MEDICAID COV2 ERAGE OF LONG-TERM SYMPTOMS OF COVID– 

3 19. 

4 (a) RESEARCH.—The Secretary of Health and 

5 Human Services shall expand the Chronic Conditions 

6 Data Warehouse research database of the Centers for 

7 Medicare & Medicaid Services to collect data on items and 

8 services furnished to individuals under a State plan (or 

9 a waiver of such a plan) under the Medicaid program 

10 under title XIX of the Social Security Act (42 U.S.C. 

11 1396 et seq.) or under a State child health plan (or a waiv12 er of such a plan) under the Children’s Health Insurance 

13 Program under title XXI of such Act (42 U.S.C. 1397aa 

14 et seq.) for the treatment of PASC, for purposes of assess15 ing the frequency at which COVID–19 survivors are fur16 nished such items and services. 

17 (b) AUTHORIZATION OF APPROPRIATIONS.—To carry 

18 out this section, there is authorized to be appropriated 

19 $3,000,000 for fiscal year 2022, which shall remain avail20 able until expended. 

21 SEC. 7. PROGRAM TO SUPPORT LEGAL AND SOCIAL SERV22 ICE ASSISTANCE FOR INDIVIDUALS WITH 

23 PASC. 

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

25 Human Services, acting through the Administrator of the 

26 Administration for Community Living, shall award grants 


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1 or contracts to eligible entities for purposes of establishing 

2 or expanding medical-legal partnerships, or increasing the 

3 availability of legal assistance or social supports necessary, 

4 to provide effective aid or support to individuals with 

5 PASC or related post-viral illnesses and conditions who 

6 are seeking assistance in obtaining or maintaining access 

7 to, or in legal matters relating to, any of the following 

8 services, at minimal or no cost to the individuals: 

9 (1) The Social Security Disability Insurance 

10 program under section 223 of the Social Security 

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

12 (2) The supplemental security income program 

13 under title XVI of the Social Security Act (42 

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

15 (3) Survivors benefits under title II of the So16 cial Security Act (42 U.S.C. 401 et seq.). 

17 (4) Housing matters. 

18 (5) Access to medical care. 

19 (6) Access to vocational rehabilitation services 

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

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

22 (7) Access to assistive technology under the As23 sistive Technology Act of 1998 (29 U.S.C. 3001 et 

24 seq.). 


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1 (8) Early intervention, specialized instruction, 

2 and related services and accommodations for chil3 dren provided under parts B and C of the Individ4 uals with Disabilities Education Act (20 U.S.C. 

5 1411 et seq.; 20 U.S.C. 1431 et seq.) and section 

6 504 of the Rehabilitation Act of 1973 (29 U.S.C. 

7 794). 

8 (9) The low-income home energy assistance pro9 gram established under the Low-Income Home En10 ergy Assistance Act of 1981 (42 U.S.C. 8621 et 

11 seq.). 

12 (10) Employment supports. 

13 (11) Nutrition assistance. 

14 (12) Other support services for low-income indi15 viduals and people with disabilities (as defined in 

16 section 3 of the Americans with Disabilities Act of 

17 1990 (42 U.S.C. 12102)). 

18 (b) ELIGIBILITY FOR AWARDS.— 

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

20 award under this section, an entity shall— 

21 (A) be— 

22 (i) a State, or an agency imple23 menting the State protection and advocacy 

24 system (as defined in section 102 of the 

25 Developmental Disabilities Assistance and 


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

2 15002)); 

3 (ii) a nonprofit entity or a publicly 

4 funded organization not acting in a govern5 mental capacity, such as a law school; 

6 (iii) an Indian Tribe or Tribal organi7 zation; 

8 (iv) an urban Indian organization; 

9 (v) a territory; 

10 (vi) a health care provider with an ex11 isting multi-disciplinary clinic or other spe12 cialized program focused on serving indi13 viduals with PASC, underserved commu14 nities, or low-income patients, or with a 

15 demonstrated intent to create such a pro16 gram; 

17 (vii) an entity providing legal services; 

18 or 

19 (viii) a consortium of entities de20 scribed in clauses (i) through (vii); 

21 (B) agree to use the award for the pur22 poses described in subsection (c); and 

23 (C) partner with at least one community24 based organization with a demonstrated history 

25 of serving people with disabilities, including 


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1 helping people with disabilities access sup2 portive services, or a demonstrated history of 

3 serving impacted communities, including lim4 ited-English proficient communities. 

5 (2) PRIORITY.—In making awards under sub6 section (a), the Secretary shall give priority to enti7 ties described in paragraph that certify in writing 

8 that any person providing legal assistance through a 

9 program supported by the award— 

10 (A)(i) has demonstrated expertise in pro11 viding legal assistance to people with disabil12 ities; or 

13 (ii) is partnered with a person that has 

14 demonstrated expertise described in clause (i); 

15 and 

16 (B) has completed, or will complete, train17 ing in connection with disability-related legal 

18 issues. 

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

20 award under this section may use such award to— 

21 (1) establish or expand medical-legal partner22 ships or other cooperative efforts between commu23 nity-based organizations, medical and social service 

24 providers, and legal assistance providers to provide 


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1 legal assistance and help accessing or maintaining 

2 social services for individuals with PASC; 

3 (2) establish or expand efforts and projects to 

4 provide legal assistance for individuals with PASC 

5 by organizations with a demonstrated history of pro6 viding direct legal or advocacy services on behalf of 

7 people with disabilities; 

8 (3) provide technical assistance to organizations 

9 or agencies for educating individuals with PASC or 

10 parents, including foster parents, caring for children 

11 with PASC about rights related to accommodations 

12 in employment, education, or other matters as deter13 mined by the Secretary; and 

14 (4) employ staff or educate current staff on as15 sisting individuals with PASC in obtaining health 

16 care, social services, or legal services. 

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

18 under this section shall collect data and report information 

19 to the Secretary of Health and Human Services in a man20 ner prescribed by such Secretary. 

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

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

23 the Secretary of Health and Human Services shall submit 

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

25 and Pensions of the Senate and the Committee on Energy 


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1 and Commerce of the House of Representatives, which 

2 shall also be made publicly available, outlining the number 

3 of individuals who sought services offered by recipients of 

4 awards under this section and the services provided. Such 

5 report shall include a summary of activities conducted 

6 under the program under this section, and information 

7 broken down by award recipient. 

8 (f) AUTHORIZATION OF APPROPRIATIONS.— 

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

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

11 for each of fiscal years 2023 through 2027. 

12 (2) NONSUPPLANTATION.—Amounts made 

13 available under this section shall be used to supple14 ment and not supplant other Federal, State, and 

15 local funds expended to further the purpose of this 

16 section. 

17 SEC. 8. DEFINITIONS. 

18 In this Act: 

19 (1) INDIAN TRIBE; TRIBAL ORGANIZATION.— 

20 The terms ‘‘Indian Tribe’’ and ‘‘Tribal organiza21 tion’’ have the meanings given the terms ‘‘Indian 

22 tribe’’ and ‘‘tribal organization’’ in section 4 of the 

23 Indian Self-Determination and Education Assistance 

24 Act (25 U.S.C. 5304). 


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1 (2) PASC.—The term ‘‘PASC’’ means post2 acute sequelae of COVID–19, commonly referred to 

3 as ‘‘long COVID’’. 

4 (3) URBAN INDIAN ORGANIZATION.—The term 

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

6 such term in section 4 of the Indian Health Care 

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

Æ 


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