CARE for Long COVID Act
Bill: S.3726 | Sponsor: Sen. Kaine, Tim (D-VA)
Policy area: Health

Summary:
Comprehensive Access to Resources and Education for Long COVID Act or the CARE for Long COVID Act
This bill requires multiple agencies to carry out research and other activities concerning individuals experiencing post-acute sequelae of COVID-19, or PASC, including health disparities related to this condition. PASC refers to persistent, long-term symptoms following recovery from acute COVID-19.
First, the bill requires the Patient-Centered Outcomes Research Trust Fund to support a patient registry to collect information on the symptoms, treatments, demographics, and other relevant data of individuals with confirmed or suspected PASC.
Second, the Department of Health and Human Services must, along with relevant agencies (1) conduct or support research on the U.S. health care system's response to long-term symptoms of COVID-19; and (2) develop resources about PASC or other post-viral illnesses, including about their potential impact on rights associated with employment, disability status, and education.
Third, the Centers for Disease Control and Prevention must disseminate information about the common symptoms, treatment options, and other topics that pertain to PASC and related post-infectious illnesses.
Fourth, the Centers for Medicare & Medicaid Services must expand its Chronic Conditions Data Warehouse to collect data on items and services furnished through Medicaid or the Children's Health Insurance Program to individuals who experience PASC.
Last, the Administration for Community Living must award grants or contracts to states, health care providers, legal services providers, and other eligible entities for expanding access to legal assistance for individuals with PASC.

To address research on, and improve access to, supportive services for 
                      individuals with long COVID.

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

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Comprehensive Access to Resources 
and Education for Long COVID Act'' or the ``CARE for Long COVID Act''.

SEC. 2. AUTHORIZATION TO FUND RESEARCH OF THE LONG-TERM SYMPTOMS OF 
              COVID-19 BY THE PATIENT-CENTERED OUTCOMES RESEARCH TRUST 
              FUND.

    (a) In General.--The Patient-Centered Outcomes Research Trust Fund 
under section 1181 of the Social Security Act (42 U.S.C. 1320e(b)) 
shall fund activities described in subsection (b) to improve treatment 
and outcomes for individuals with PASC.
    (b) Activities Described.--For purposes of subsection (a), 
activities described in this subsection shall include--
            (1) prior to creating a patient registry described in 
        paragraph (2)--
                    (A) surveying existing patient registries that 
                include individuals experiencing PASC and other 
                relevant chronic disease or health registries; and
                    (B) identifying common data elements and 
                definitions for use, in order to promote appropriate 
                data sharing for ongoing and future research;
            (2) creating a patient registry, informed by the survey 
        described in paragraph (1), for individuals with suspected or 
        confirmed PASC and related post-viral illnesses or conditions--
                    (A) with information that is culturally and 
                linguistically appropriate and easily accessible to 
                people with disabilities, and which may include--
                            (i) symptoms that arise while an individual 
                        is initially infected with COVID-19 and that 
                        may resolve over time or extend beyond the 
                        resolution of the initial symptoms;
                            (ii) persistent symptoms that arise after 
                        an individual is initially infected with COVID-
                        19 and that the clinician of such individual 
                        has reason to suspect were related to the 
                        COVID-19 diagnosis;
                            (iii) symptoms that arise in an individual 
                        that may be related to COVID-19 but a diagnosis 
                        of COVID-19 was not obtained and cannot be 
                        identified due to a lack of antibodies, false 
                        negative test results, or lack of access to 
                        timely testing;
                            (iv) treatments of individuals after 
                        primary diagnosis of COVID-19 and the 
                        effectiveness of such treatments; and
                            (v) any other relevant questions or issues 
                        related to individuals who experience a 
                        diagnosis of, treatment for, and management of 
                        care with COVID-19, PASC, or related post-viral 
                        illnesses;
                    (B) that collects information regarding co-
                morbidities, vaccination status, and demographics, 
                including age, gender, race and ethnicity, geographic 
                location, disability, and occupation of registry 
                participants;
                    (C) that synthesizes information relating to 
                individuals experiencing PASC or related post-viral 
                illnesses or conditions from the survey described in 
                paragraph (1) and other information available through 
                the patient registry; and
                    (D) that disseminates information to relevant 
                Federal departments and agencies and patients 
                participating in the registry to inform treatment and 
                policy related to COVID-19, PASC, or related post-viral 
                illnesses and conditions; and
            (3) outreach to, and inclusion (as appropriate) of, 
        individuals, including children and older adults, from 
        communities impacted by high COVID-19 rates, communities 
        affected by health disparities and inequities, including Indian 
        Tribes and Tribal organizations, urban Indian organizations, 
        people with disabilities, individuals with related post-viral 
        illnesses or conditions, health care providers, first 
        responders, and frontline workers who may be impacted by high 
        COVID-19 rates, and health care providers from diverse 
        disciplines that may treat individuals with COVID-19, PASC, or 
        related post-viral illnesses and conditions.
    (c) Privacy Protections.--Participation in the registry described 
in subsection (b)(2) shall be voluntary and personal and health 
information of participants, including information voluntarily 
submitted through the registry, shall be subject to all applicable 
privacy protections under Federal or State law.
    (d) Report.--Not later than 1 year after the establishment of the 
synthesized patient registry under subsection (b)(2), and annually 
thereafter, the Patient-Centered Outcomes Research Institute shall 
submit data, findings, and information with respect to the status of 
the patient registry (including progress, barriers, and issues) to 
Congress and the President.
    (e) Authorization of Appropriations.--To carry out this section, 
there is authorized to be appropriated $30,000,000 for fiscal year 
2023, which shall remain available until expended.

SEC. 3. RESEARCH ON UNITED STATES HEALTH CARE SYSTEM'S RESPONSE TO 
              PASC.

    (a) In General.--The Secretary of Health and Human Services 
(referred to in this Act as the ``Secretary''), in coordination with 
the Director of the Agency for Healthcare Research and Quality, the 
Director of the National Institutes of Health, and the Director of the 
Centers for Disease Control and Prevention, shall conduct or support 
research related to the United States health care system's response to 
PASC, including with respect to--
            (1) the expansion and efficacy of post-infectious disease 
        treatment, including--
                    (A) identifying obstacles to access for treatment 
                of COVID-19, PASC, or related post-viral illnesses and 
                conditions for veterans, older adults, people with 
                disabilities, children and young adults, communities of 
                color, underserved and rural communities, and other 
                groups impacted by high rates of COVID-19, as 
                determined by the Secretary;
                    (B) evaluating and identifying potential gaps or 
                other weaknesses that contribute to age, gender, 
                geographic location, disability, occupation, and racial 
                and ethnic disparities with respect to COVID-19 
                infection rates, severity and length of symptoms, and 
                outcomes; and
                    (C) identifying trends associated with differences 
                in diagnosis and treatment of PASC and related post-
                viral illnesses and conditions by demographic factors 
                such as age, gender, geographic location, disability, 
                occupation, race, ethnicity, or other factors 
                identified by the Secretary to promote health equity; 
                and
            (2) conducting and supporting research to--
                    (A) identify health care strategies that help 
                mitigate age, gender, geographic location, disability, 
                occupation, and racial and ethnic disparities in COVID-
                19 infection rates, hospitalizations, severity and 
                length of symptoms, secondary illnesses, and outcomes;
                    (B) identify health care-related factors 
                contributing to such disparities in COVID-19 infection 
                rates, hospitalizations, severity and length of 
                symptoms, secondary illnesses, and outcomes; and
                    (C) provide recommendations on ensuring equity in 
                diagnosis and access to quality post-infectious 
                treatments that may be advanced to mitigate such 
                disparities, going forward.
    (b) Authorization of Appropriations.--To carry out this section, 
there is authorized to be appropriated $15,000,000 for fiscal year 
2023, which shall remain available until expended.

SEC. 4. EDUCATION AND DISSEMINATION OF INFORMATION ON PASC.

    (a) Post-Acute Sequelae of COVID-19 (PASC) Public Education 
Program.--The Secretary, acting through the Director of the Centers for 
Disease Control and Prevention, shall develop and disseminate to the 
public information regarding PASC, in plain language and in a manner 
that is culturally and linguistically appropriate and easily accessible 
to people with disabilities and people with limited English 
proficiency, including information on--
            (1) the awareness, incidence, and short- and long-term 
        health effects associated with COVID-19 infection;
            (2) illnesses related and often comorbid with PASC, which 
        may include--
                    (A) myalgic encephalomyelitis/chronic fatigue 
                syndrome and fibromyalgia;
                    (B) postural orthostatic tachycardia syndrome and 
                other forms of dysautonomia;
                    (C) autoimmune diseases associated with viral 
                triggers;
                    (D) connective tissue diseases exacerbated or 
                triggered by infections;
                    (E) mast cell activation syndrome;
                    (F) related conditions and illnesses that may 
                affect adults, young adults, or children; and
                    (G) other conditions, as the Secretary determines 
                appropriate; and
            (3) the availability, as medically appropriate, of 
        treatment options for PASC and related post-viral illnesses and 
        conditions overlapping with PASC identified under paragraph 
        (2).
    (b) Post-Acute Sequelae of COVID-19 (PASC) Provider Education 
Program.--The Secretary, acting through the Director of the Centers for 
Disease Control and Prevention, shall, in consultation with 
representatives from impacted communities and health care providers who 
treat these communities or individuals, develop and disseminate to 
health care providers information on PASC, recommended assessment 
tools, and management of PASC and related conditions for the purpose of 
ensuring that health care providers remain informed about current 
information on such emerging illness and related post-infectious 
illnesses, which have been shown to be closely related to PASC, 
including information on--
            (1) PASC symptoms such as cognitive, neurological, 
        psychiatric, gastrointestinal, respiratory, and cardiovascular 
        symptoms;
            (2) myalgic encephalomyelitis/chronic fatigue syndrome and 
        fibromyalgia;
            (3) postural orthostatic tachycardia syndrome and other 
        forms of dysautonomia;
            (4) autoimmune diseases associated with viral triggers;
            (5) connective tissue diseases exacerbated or triggered by 
        infections;
            (6) mast cell activation syndrome;
            (7) related conditions and illnesses that may affect 
        adults, young adults, or children; and
            (8) other conditions as the Secretary determines 
        appropriate.
    (c) Considerations.--In developing and disseminating information in 
subsections (a) and (b), the Secretary shall ensure that--
            (1) guidance on PASC diagnostics, treatments, and care 
        include demographic factors such as age, gender, geographic 
        location, disability, occupation, race and ethnicity, and other 
        factors identified by the Secretary to promote health equity; 
        and
            (2) individuals with PASC or related post-viral illnesses 
        and conditions, and entities representing such individuals, are 
        empowered to participate in protocol development and outreach 
        and education strategies.
    (d) Dissemination of Information.--The Secretary shall disseminate, 
in plain language and in a manner that is culturally and linguistically 
appropriate and easily accessible to people with disabilities and 
individuals with limited English proficiency, information under 
subsections (a) and (b), directly or through arrangements with intra-
agency initiatives, nonprofit organizations, consumer groups, 
institutions of higher learning (as defined in section 101 of the 
Higher Education Act of 1965 (20 U.S.C. 1001)), local educational 
agencies or State educational agencies (as defined in section 8101 of 
the Elementary and Secondary Education Act of 1965 (20 U.S.C. 7801)), 
or Federal, State, Tribal, or local public private partnerships.
    (e) Authorization of Appropriations.--To carry out this section, 
there is authorized to be appropriated $30,000,000 for each of fiscal 
years 2023 through 2025, which shall remain available until expended.

SEC. 5. INTERAGENCY COORDINATION ON PUBLIC ENGAGEMENT AND INFORMATION 
              DISSEMINATION ON PASC.

    (a) In General.--The Secretary of Health and Human Services shall 
convene relevant agencies to develop information and resources to make 
available to the public and for dissemination to individuals and 
communities impacted by PASC and related post-viral illness and 
conditions to raise awareness and provide education on the impact PASC 
or related post-viral illness and conditions may have on rights 
associated with employment, disability status, and education afforded 
under Federal and State law.
    (b) Collaboration and Consultation.--In developing the information 
and resources under subsection (a), the Secretary of Health and Human 
Services--
            (1) shall collaborate with--
                    (A) the Department of Labor, including the Office 
                of Disability Employment Policy of the Department of 
                Labor;
                    (B) the Department of Education;
                    (C) the Social Security Administration;
                    (D) relevant agencies within the Department of 
                Health and Human Services, including--
                            (i) the Centers for Disease Control and 
                        Prevention;
                            (ii) the National Institutes of Health;
                            (iii) the Centers for Medicare & Medicaid 
                        Services;
                            (iv) the Administration for Children and 
                        Families; and
                            (v) the Administration on Community Living; 
                        and
                    (E) other Federal departments, agencies, or 
                offices, as the Secretary determines appropriate to 
                carry out the activities described in this section; and
            (2) may consult with--
                    (A) communities and professions impacted by high 
                COVID-19 rates;
                    (B) individuals with PASC or related post-viral 
                illnesses and conditions; and
                    (C) organizations and experts that represent the 
                rights and interests of the groups described in 
                subparagraphs (A) and (B).
    (c) Information and Resources Developed.--Not later than 1 year 
after the date of enactment of this Act, the entities described in 
subsection (b) shall develop information and resources to include--
            (1) educational materials to school administrators, 
        counselors, educators, parents, coaches, school nurses, and 
        other school staff about PASC and related post-viral illnesses 
        and conditions with clear guidance on appropriate academic, 
        social, and emotional supports and services, and the rights of 
        students with disabilities, available to students and families;
            (2) guidance for employers on the rights of people with 
        disabilities related to PASC and related post-viral illnesses 
        and conditions; and
            (3) guidance on PASC and related post-viral illnesses and 
        conditions as a disability, including recommendations to 
        streamline the process of applying for benefits through the 
        Social Security Administration, including guidance on 
        evaluating PASC and related post-viral illnesses and conditions 
        for individuals under the age of 18, continuing disability 
        reviews, and the payment of benefits under part L of title I of 
        the Omnibus Crime Control and Safe Streets Act of 1968 (34 
        U.S.C. 10281 et seq.).
    (d) Appropriations.--To carry out this section, there is authorized 
to be appropriated $30,000,000 for each of fiscal years 2023 through 
2025, which shall remain available until expended.

SEC. 6. RESEARCH WITH RESPECT TO MEDICAID COVERAGE OF LONG-TERM 
              SYMPTOMS OF COVID-19.

    (a) Research.--The Secretary of Health and Human Services shall 
expand the Chronic Conditions Data Warehouse research database of the 
Centers for Medicare & Medicaid Services to collect data on items and 
services furnished to individuals under a State plan (or a waiver of 
such a plan) under the Medicaid program under title XIX of the Social 
Security Act (42 U.S.C. 1396 et seq.) or under a State child health 
plan (or a waiver of such a plan) under the Children's Health Insurance 
Program under title XXI of such Act (42 U.S.C. 1397aa et seq.) for the 
treatment of PASC, for purposes of assessing the frequency at which 
COVID-19 survivors are furnished such items and services.
    (b) Authorization of Appropriations.--To carry out this section, 
there is authorized to be appropriated $3,000,000 for fiscal year 2022, 
which shall remain available until expended.

SEC. 7. PROGRAM TO SUPPORT LEGAL AND SOCIAL SERVICE ASSISTANCE FOR 
              INDIVIDUALS WITH PASC.

    (a) In General.--The Secretary of Health and Human Services, acting 
through the Administrator of the Administration for Community Living, 
shall award grants or contracts to eligible entities for purposes of 
establishing or expanding medical-legal partnerships, or increasing the 
availability of legal assistance or social supports necessary, to 
provide effective aid or support to individuals with PASC or related 
post-viral illnesses and conditions who are seeking assistance in 
obtaining or maintaining access to, or in legal matters relating to, 
any of the following services, at minimal or no cost to the 
individuals:
            (1) The Social Security Disability Insurance program under 
        section 223 of the Social Security Act (42 U.S.C. 423).
            (2) The supplemental security income program under title 
        XVI of the Social Security Act (42 U.S.C. 1381 et seq.).
            (3) Survivors benefits under title II of the Social 
        Security Act (42 U.S.C. 401 et seq.).
            (4) Housing matters.
            (5) Access to medical care.
            (6) Access to vocational rehabilitation services under 
        title I of the Rehabilitation Act of 1973 (29 U.S.C. 720 et 
        seq.).
            (7) Access to assistive technology under the Assistive 
        Technology Act of 1998 (29 U.S.C. 3001 et seq.).
            (8) Early intervention, specialized instruction, and 
        related services and accommodations for children provided under 
        parts B and C of the Individuals with Disabilities Education 
        Act (20 U.S.C. 1411 et seq.; 20 U.S.C. 1431 et seq.) and 
        section 504 of the Rehabilitation Act of 1973 (29 U.S.C. 794).
            (9) The low-income home energy assistance program 
        established under the Low-Income Home Energy Assistance Act of 
        1981 (42 U.S.C. 8621 et seq.).
            (10) Employment supports.
            (11) Nutrition assistance.
            (12) Other support services for low-income individuals and 
        people with disabilities (as defined in section 3 of the 
        Americans with Disabilities Act of 1990 (42 U.S.C. 12102)).
    (b) Eligibility for Awards.--
            (1) In general.--To be eligible to receive an award under 
        this section, an entity shall--
                    (A) be--
                            (i) a State, or an agency implementing the 
                        State protection and advocacy system (as 
                        defined in section 102 of the Developmental 
                        Disabilities Assistance and Bill of Rights Act 
                        of 2000 (42 U.S.C. 15002));
                            (ii) a nonprofit entity or a publicly 
                        funded organization not acting in a 
                        governmental capacity, such as a law school;
                            (iii) an Indian Tribe or Tribal 
                        organization;
                            (iv) an urban Indian organization;
                            (v) a territory;
                            (vi) a health care provider with an 
                        existing multi-disciplinary clinic or other 
                        specialized program focused on serving 
                        individuals with PASC, underserved communities, 
                        or low-income patients, or with a demonstrated 
                        intent to create such a program;
                            (vii) an entity providing legal services; 
                        or
                            (viii) a consortium of entities described 
                        in clauses (i) through (vii);
                    (B) agree to use the award for the purposes 
                described in subsection (c); and
                    (C) partner with at least one community-based 
                organization with a demonstrated history of serving 
                people with disabilities, including helping people with 
                disabilities access supportive services, or a 
                demonstrated history of serving impacted communities, 
                including limited-English proficient communities.
            (2) Priority.--In making awards under subsection (a), the 
        Secretary shall give priority to entities described in 
        paragraph that certify in writing that any person providing 
        legal assistance through a program supported by the award--
                    (A)(i) has demonstrated expertise in providing 
                legal assistance to people with disabilities; or
                    (ii) is partnered with a person that has 
                demonstrated expertise described in clause (i); and
                    (B) has completed, or will complete, training in 
                connection with disability-related legal issues.
    (c) Use of Funds.--An eligible entity receiving an award under this 
section may use such award to--
            (1) establish or expand medical-legal partnerships or other 
        cooperative efforts between community-based organizations, 
        medical and social service providers, and legal assistance 
        providers to provide legal assistance and help accessing or 
        maintaining social services for individuals with PASC;
            (2) establish or expand efforts and projects to provide 
        legal assistance for individuals with PASC by organizations 
        with a demonstrated history of providing direct legal or 
        advocacy services on behalf of people with disabilities;
            (3) provide technical assistance to organizations or 
        agencies for educating individuals with PASC or parents, 
        including foster parents, caring for children with PASC about 
        rights related to accommodations in employment, education, or 
        other matters as determined by the Secretary; and
            (4) employ staff or educate current staff on assisting 
        individuals with PASC in obtaining health care, social 
        services, or legal services.
    (d) Reporting.--Eligible entities receiving an award under this 
section shall collect data and report information to the Secretary of 
Health and Human Services in a manner prescribed by such Secretary.
    (e) Evaluation.--Not later than 1 year after the date of enactment 
of this Act, and annually thereafter, the Secretary of Health and Human 
Services shall submit a report to the Committee on Health, Education, 
Labor, and Pensions of the Senate and the Committee on Energy and 
Commerce of the House of Representatives, which shall also be made 
publicly available, outlining the number of individuals who sought 
services offered by recipients of awards under this section and the 
services provided. Such report shall include a summary of activities 
conducted under the program under this section, and information broken 
down by award recipient.
    (f) Authorization of Appropriations.--
            (1) In general.--There is authorized to be appropriated to 
        carry out this section $50,000,000 for each of fiscal years 
        2023 through 2027.
            (2) Nonsupplantation.--Amounts made available under this 
        section shall be used to supplement and not supplant other 
        Federal, State, and local funds expended to further the purpose 
        of this section.

SEC. 8. DEFINITIONS.

    In this Act:
            (1) Indian tribe; tribal organization.--The terms ``Indian 
        Tribe'' and ``Tribal organization'' have the meanings given the 
        terms ``Indian tribe'' and ``tribal organization'' in section 4 
        of the Indian Self-Determination and Education Assistance Act 
        (25 U.S.C. 5304).
            (2) PASC.--The term ``PASC'' means post-acute sequelae of 
        COVID-19, commonly referred to as ``long COVID''.
            (3) Urban indian organization.--The term ``urban Indian 
        organization'' has the meaning given such term in section 4 of 
        the Indian Health Care Improvement Act (25 U.S.C. 1603).
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