CARE for Long COVID Act

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<html><body><pre>[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1616 Introduced in House (IH)]

&lt;DOC&gt;






118th CONGRESS
  1st Session
                                H. R. 1616

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


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                             March 17, 2023

Mr. Beyer (for himself and Mr. Bergman) introduced the following bill; 
       which was referred to the Committee on Energy and Commerce

_______________________________________________________________________

                                 A BILL


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

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

SECTION 1. SHORT TITLE.

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

SEC. 2. AUTHORIZATION TO FUND A PATIENT REGISTRY FOR RESEARCH ON LONG 
              COVID AND RELATED CONDITIONS.

    (a) In General.--The Secretary of Health and Human Services 
(referred to in this Act as the ``Secretary''), acting in coordination 
with the Patient-Centered Outcomes Research Institute established under 
section 1181 of the Social Security Act (42 U.S.C. 1320e(b)), shall 
fund activities described in subsection (b) to improve treatment and 
outcomes for individuals with Long COVID and related conditions.
    (b) Activities Described.--For purposes of subsection (a), 
activities described in this subsection shall include--
            (1) creating or maintaining a regularly updated patient 
        registry of individuals with suspected or confirmed Long COVID 
        and related conditions, including information on--
                    (A) symptoms that arise while an individual is 
                initially infected with COVID-19 and that may resolve 
                over time or extend beyond the resolution of the 
                initial symptoms;
                    (B) persistent symptoms that arise after an 
                individual is initially infected with COVID-19 and that 
                the clinician of such individual has reason to suspect 
                were related to the COVID-19 diagnosis;
                    (C) symptoms that arise in an individual that may 
                be related to COVID-19, but a diagnosis of COVID-19 was 
                not obtained and cannot be identified due to a lack of 
                antibodies, false negative test results, or lack of 
                access to timely testing;
                    (D) treatments of individuals after primary 
                diagnosis of COVID-19 and the effectiveness of such 
                treatments;
                    (E) any other relevant questions or issues related 
                to individuals who experience a diagnosis of, treatment 
                for, and management of care with COVID-19, Long COVID, 
                and related conditions; and
                    (F) comorbidities, vaccination status, and 
                demographics, including age, gender, race and 
                ethnicity, geographic location, disability, and 
                occupation of registry participants;
            (2) synthesis of information relating to individuals 
        experiencing Long COVID and related conditions and other 
        information available through the patient registry;
            (3) dissemination of information to relevant Federal 
        departments and agencies and patients participating in the 
        registry to inform treatment and policy related to COVID-19, 
        Long COVID, and related conditions;
            (4) an assurance that the registry utilizes common data 
        elements and definitions for use in order to promote 
        appropriate data sharing for ongoing and future research; and
            (5) outreach to, and inclusion in the patient registry, as 
        appropriate, of individuals, including children and older 
        adults, from communities impacted by high COVID-19 and Long 
        COVID rates, communities affected by health disparities and 
        inequities (including Indian Tribes and Tribal organizations, 
        urban Indian organizations, and people with disabilities), 
        individuals with related conditions, health care providers, 
        first responders, military service members, veterans, pregnant 
        and lactating women, frontline workers who may be impacted by 
        high COVID-19 and Long COVID rates, and health care providers 
        from diverse disciplines that may treat individuals with COVID-
        19, Long COVID, and related conditions.
    (c) Voluntary Participation; Privacy Protections.--
            (1) Voluntary participation.--Participation in the registry 
        described in subsection (b)(1) shall be voluntary, and a person 
        creating, assisting in the creation of, or maintaining the 
        registry shall not include in the registry information about an 
        individual unless the individual consents to the inclusion of 
        such information.
            (2) Privacy protections.--Information about an individual 
        that is included in the registry shall be subject to all 
        applicable privacy protections under Federal and State law.
    (d) Report.--Not later than 1 year after the establishment of the 
synthesized patient registry under subsection (b)(2), and annually 
thereafter, the Secretary shall submit a report that includes data, 
findings, and information with respect to the status of the patient 
registry (including progress, barriers, and issues) to Congress and the 
President.
    (e) Authorization of Appropriations.--To carry out this section, 
there is authorized to be appropriated $30,000,000 for fiscal year 
2024, which shall remain available until expended.

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

    (a) In General.--The Secretary, in coordination with the Director 
of the Agency for Healthcare Research and Quality, the Director of the 
National Institutes of Health, and the Director of the Centers for 
Disease Control and Prevention, shall conduct or support research 
related to the United States health care system's response to Long 
COVID, including with respect to--
            (1) the expansion and effectiveness of post-infectious 
        disease treatment, including--
                    (A) identifying barriers to access for treatment of 
                COVID-19, Long COVID, and related conditions for 
                veterans, older adults, people with disabilities, 
                children and young adults, communities of color, 
                underserved and rural communities, and other groups 
                impacted by high rates of COVID-19, as determined by 
                the Secretary;
                    (B) evaluating and identifying potential gaps or 
                other weaknesses that contribute to age, gender, 
                geographic location, disability, occupation, and racial 
                and ethnic disparities with respect to COVID-19 
                infection rates, severity and length of symptoms, 
                associated diagnoses, and outcomes; and
                    (C) identifying trends associated with differences 
                in diagnosis and treatment of Long COVID and related 
                conditions by demographic factors such as age, gender, 
                geographic location, disability, occupation, race, 
                ethnicity, or other factors identified by the Secretary 
                to promote health equity; and
            (2) conducting and supporting research to--
                    (A) identify health care strategies that help 
                mitigate age, gender, geographic location, disability, 
                occupation, and racial and ethnic disparities in COVID-
                19 infection rates, hospitalizations, severity and 
                length of symptoms, secondary illnesses, and outcomes;
                    (B) identify health care-related factors 
                contributing to such disparities in COVID-19 infection 
                rates, hospitalizations, severity and length of 
                symptoms, secondary illnesses, and outcomes; and
                    (C) provide recommendations on ensuring equity in 
                diagnosis and access to quality post-infectious 
                treatments that may be advanced to mitigate such 
                disparities.
    (b) Authorization of Appropriations.--To carry out this section, 
there is authorized to be appropriated $15,000,000 for fiscal year 
2024, which shall remain available until expended.

SEC. 4. EDUCATION AND DISSEMINATION OF INFORMATION ON LONG COVID.

    (a) Long COVID Public Education Program.--The Secretary shall 
develop and disseminate to the public regularly updated information 
regarding Long COVID, in plain language and in a manner that is 
culturally and linguistically appropriate and easily accessible to 
people with disabilities and people with limited English proficiency, 
including information on--
            (1) the awareness, incidence, and short- and long-term 
        health effects associated with COVID-19 infection, including 
        Long COVID associated disability;
            (2) illnesses related and often comorbid with Long COVID, 
        which may include--
                    (A) myalgic encephalomyelitis/chronic fatigue 
                syndrome;
                    (B) fibromyalgia;
                    (C) postural orthostatic tachycardia syndrome and 
                other forms of dysautonomia;
                    (D) autoimmune diseases associated with viral 
                triggers;
                    (E) connective tissue diseases exacerbated or 
                triggered by infections;
                    (F) mast cell activation syndrome;
                    (G) related conditions and illnesses that may 
                affect adults, young adults, or children; and
                    (H) other conditions, as the Secretary determines 
                appropriate;
            (3) the availability, as medically appropriate, of 
        treatment options for Long COVID and related conditions 
        overlapping with Long COVID identified under paragraph (2); and
            (4) strategies for reducing the likelihood of developing 
        Long COVID.
    (b) Long COVID Provider Education Program.--The Secretary, in 
consultation with representatives from impacted communities and health 
care providers who treat such communities or individuals, shall develop 
and disseminate to health care providers, including by developing or 
improving continuing medical education programs that advance the 
education of such providers, information on Long COVID, recommended 
assessment tools, including how to assess patients' functional capacity 
to support applications for disability benefits, and management of Long 
COVID and related conditions for the purpose of ensuring that health 
care providers remain informed about current information on Long COVID 
and related conditions, including information on--
            (1) Long COVID symptoms such as cognitive, neurological, 
        psychiatric, gastrointestinal, respiratory, and cardiovascular 
        symptoms;
            (2) myalgic encephalomyelitis/chronic fatigue syndrome and 
        fibromyalgia;
            (3) postural orthostatic tachycardia syndrome and other 
        forms of dysautonomia;
            (4) autoimmune diseases associated with viral triggers;
            (5) connective tissue diseases exacerbated or triggered by 
        infections;
            (6) mast cell activation syndrome;
            (7) related conditions and illnesses that may affect 
        adults, young adults, or children; and
            (8) other conditions as the Secretary determines 
        appropriate.
    (c) Considerations.--In developing and disseminating information in 
subsections (a) and (b), the Secretary shall ensure that--
            (1) guidance on Long COVID diagnostics, treatments, and 
        care include demographic factors such as age, gender, 
        geographic location, disability, occupation, race and 
        ethnicity, and other factors identified by the Secretary to 
        promote health equity; and
            (2) individuals with Long COVID and related conditions, and 
        entities representing such individuals, are empowered to 
        participate in protocol development and outreach and education 
        strategies.
    (d) Dissemination of Information.--The Secretary shall disseminate, 
in plain language and in a manner that is culturally and linguistically 
appropriate and easily accessible to people with disabilities and 
individuals with limited English proficiency, information under 
subsections (a) and (b), directly or through arrangements with intra-
agency initiatives, nonprofit organizations, consumer groups, Federally 
qualified health centers, institutions of higher learning (as defined 
in section 101 of the Higher Education Act of 1965 (20 U.S.C. 1001)), 
local educational agencies or State educational agencies (as defined in 
section 8101 of the Elementary and Secondary Education Act of 1965 (20 
U.S.C. 7801)), or Federal, State, Tribal, or local public private 
partnerships.
    (e) Authorization of Appropriations.--To carry out this section, 
there is authorized to be appropriated $30,000,000 for each of fiscal 
years 2024 through 2026, which shall remain available until expended.

SEC. 5. INTERAGENCY COORDINATION AND INFORMATION DISSEMINATION ON 
              RIGHTS ASSOCIATED WITH LONG COVID.

    (a) In General.--The Secretary shall convene relevant agencies to 
develop information and resources to make available to the public and 
for dissemination to individuals and communities impacted by Long COVID 
and related conditions to raise awareness and provide education on the 
impact Long COVID and related conditions may have on rights associated 
with employment, disability status, and education afforded under 
Federal and State law.
    (b) Collaboration and Consultation.--In developing the information 
and resources under subsection (a), the Secretary--
            (1) shall collaborate with--
                    (A) the Secretary of Labor and the Assistant 
                Secretary of Labor for Disability Employment Policy;
                    (B) the Secretary of Education;
                    (C) the Commissioner of the Social Security 
                Administration;
                    (D) the Secretary of Veterans Affairs;
                    (E) the heads of relevant agencies within the 
                Department of Health and Human Services, including--
                            (i) the Director of the Centers for Disease 
                        Control and Prevention;
                            (ii) the Director of the National 
                        Institutes of Health;
                            (iii) the Administrator of the Centers for 
                        Medicare & Medicaid Services;
                            (iv) the Administrator of the 
                        Administration for Children and Families; and
                            (v) the Administrator of the Administration 
                        for Community Living; and
                    (F) the heads of other Federal departments, 
                agencies, or offices, as the Secretary determines 
                appropriate to carry out the activities described in 
                this section; and
            (2) may consult with--
                    (A) communities and professionals impacted by high 
                COVID-19 rates;
                    (B) individuals with Long COVID and related 
                conditions;
                    (C) caregivers of individuals with Long COVID and 
                related conditions; and
                    (D) organizations and experts that represent the 
                rights and interests of the groups described in 
                subparagraphs (A), (B), and (C).
    (c) Information and Resources Developed.--Not later than 1 year 
after the date of enactment of this Act, and annually thereafter, the 
entities described in subsection (b) shall develop information and 
resources to include--
            (1) educational materials to school administrators, 
        counselors, educators, parents, coaches, school nurses, and 
        other school staff about Long COVID and related conditions with 
        clear guidance on appropriate academic, social, and emotional 
        supports and services, and the rights of students with 
        disabilities, available to students and families;
            (2) guidance for employers on the rights of people with 
        disabilities related to Long COVID and related conditions, 
        including strategies for how employers can support such 
        individuals in the workplace; and
            (3) guidance on Long COVID and related conditions as a 
        disability, including recommendations to streamline the process 
        of applying for benefits through the Social Security 
        Administration, including guidance on evaluating Long COVID and 
        related conditions for individuals under the age of 18, 
        continuing disability reviews, and the payment of benefits 
        under part L of title I of the Omnibus Crime Control and Safe 
        Streets Act of 1968 (34 U.S.C. 10281 et seq.).
    (d) Dissemination of Information.--The Secretary shall disseminate 
the information and resources developed under subsection (c) to--
            (1) States or State agencies implementing the State 
        protection and advocacy system (as defined in section 102 of 
        the Developmental Disabilities Assistance and Bill of Rights 
        Act of 2000 (42 U.S.C. 15002));
            (2) State agencies on aging or area agencies on aging (as 
        such terms are defined in section 102 of the Older Americans 
        Act of 1965 (42 U.S.C. 3002));
            (3) organizations and experts that represent workers' 
        rights and education; and
            (4) other organizations and experts that represent the 
        rights and interests of individuals with Long COVID and related 
        conditions.
    (e) Appropriations.--To carry out this section, there is authorized 
to be appropriated $30,000,000 for each of fiscal years 2024 through 
2026, which shall remain available until expended.

SEC. 6. PROGRAM TO SUPPORT LEGAL AND SOCIAL SERVICE ASSISTANCE FOR 
              INDIVIDUALS WITH LONG COVID.

    (a) In General.--The Secretary, acting through the Administrator of 
the Administration for Community Living, shall award grants or 
contracts to eligible entities for purposes of establishing or 
expanding medical-legal partnerships, or increasing the availability of 
legal assistance or social supports necessary, to provide effective aid 
or support to individuals with Long COVID and related conditions, and 
their caregivers, who are seeking assistance in obtaining or 
maintaining access to, or in legal matters relating to, any of the 
following services, at minimal or no cost to the individuals:
            (1) The Social Security Disability Insurance program under 
        section 223 of the Social Security Act (42 U.S.C. 423).
            (2) The supplemental security income program under title 
        XVI of the Social Security Act (42 U.S.C. 1381 et seq.).
            (3) Survivors benefits under title II of the Social 
        Security Act (42 U.S.C. 401 et seq.).
            (4) Housing matters.
            (5) Access to medical care.
            (6) Access to vocational rehabilitation services under 
        title I of the Rehabilitation Act of 1973 (29 U.S.C. 720 et 
        seq.).
            (7) Access to assistive technology under the Assistive 
        Technology Act of 1998 (29 U.S.C. 3001 et seq.).
            (8) Early intervention, specialized instruction, and 
        related services and accommodations for children provided under 
        parts B and C of the Individuals with Disabilities Education 
        Act (20 U.S.C. 1411 et seq.; 20 U.S.C. 1431 et seq.) and 
        section 504 of the Rehabilitation Act of 1973 (29 U.S.C. 794).
            (9) The low-income home energy assistance program 
        established under the Low-Income Home Energy Assistance Act of 
        1981 (42 U.S.C. 8621 et seq.).
            (10) Employment supports.
            (11) Nutrition assistance.
            (12) Traumatic brain injury supports.
            (13) Other support services for low-income individuals and 
        people with disabilities (as defined in section 3 of the 
        Americans with Disabilities Act of 1990 (42 U.S.C. 12102)).
    (b) Eligibility for Awards.--
            (1) In general.--To be eligible to receive an award under 
        this section, an entity shall--
                    (A) be--
                            (i) a State, or an agency implementing the 
                        State protection and advocacy system (as 
                        defined in section 102 of the Developmental 
                        Disabilities Assistance and Bill of Rights Act 
                        of 2000 (42 U.S.C. 15002));
                            (ii) a State agency or area agency on aging 
                        (as such terms are defined in section 102 of 
                        the Older Americans Act of 1965 (42 U.S.C. 
                        3002));
                            (iii) a nonprofit entity or a publicly 
                        funded organization not acting in a 
                        governmental capacity, such as a law school;
                            (iv) an Indian Tribe or Tribal 
                        organization;
                            (v) an urban Indian organization;
                            (vi) a territory;
                            (vii) a health care provider with an 
                        existing multi-disciplinary clinic or other 
                        specialized program focused on serving 
                        individuals with Long COVID, underserved 
                        communities, or low-income patients, or with a 
                        demonstrated intent to create such a program;
                            (viii) an entity providing legal services; 
                        or
                            (ix) a consortium of entities described in 
                        clauses (i) through (viii);
                    (B) agree to use the award for the purposes 
                described in subsection (c); and
                    (C) partner with at least one community-based 
                organization with a demonstrated history of serving 
                people with disabilities, including helping people with 
                disabilities access supportive services, or a 
                demonstrated history of serving impacted communities, 
                including limited-English proficient communities.
            (2) Priority.--In making awards under subsection (a), the 
        Secretary shall give priority to entities described in 
        paragraph (1) that certify in writing that any person providing 
        legal assistance through a program supported by the award--
                    (A)(i) has demonstrated expertise in providing 
                legal assistance to people with disabilities; or
                    (ii) is partnered with a person or organization 
                that has demonstrated expertise described in clause 
                (i); and
                    (B) has completed, or will complete, training in 
                connection with disability-related legal issues.
    (c) Use of Funds.--An eligible entity receiving an award under this 
section may use such award to--
            (1) establish or expand medical-legal partnerships or other 
        cooperative efforts between community-based organizations, 
        medical and social service providers, and legal assistance 
        providers to provide legal assistance and help accessing or 
        maintaining social services for individuals with Long COVID;
            (2) establish or expand efforts and projects to provide 
        legal assistance for individuals with Long COVID by 
        organizations with a demonstrated history of providing direct 
        legal or advocacy services on behalf of people with 
        disabilities;
            (3) provide technical assistance to organizations or 
        agencies for educating individuals with Long COVID, caregivers, 
        and parents, including foster parents, caring for children with 
        Long COVID about rights related to accommodations in 
        employment, education, or other matters as determined by the 
        Secretary; and
            (4) employ staff or educate current staff on assisting 
        individuals with Long COVID in obtaining health care, social 
        services, or legal services.
    (d) Reporting.--Eligible entities receiving an award under this 
section shall collect data and report information to the Secretary of 
Health and Human Services in a manner prescribed by such Secretary.
    (e) Evaluation.--Not later than 1 year after the date of enactment 
of this Act, and annually thereafter, the Secretary of Health and Human 
Services shall submit a report to the Committee on Health, Education, 
Labor, and Pensions of the Senate and the Committee on Energy and 
Commerce of the House of Representatives, which shall also be made 
publicly available, outlining the number of individuals who sought 
services offered by recipients of awards under this section and the 
services provided. Such report shall include a summary of activities 
conducted under the program under this section, and information broken 
down by award recipient.
    (f) Authorization of Appropriations.--
            (1) In general.--There is authorized to be appropriated to 
        carry out this section $50,000,000 for each of fiscal years 
        2024 through 2028.
            (2) Nonsupplantation.--Amounts made available under this 
        section shall be used to supplement and not supplant other 
        Federal, State, and local funds expended to further the purpose 
        of this section.

SEC. 7. DEFINITIONS.

    In this Act:
            (1) Indian tribe.--The terms ``Indian Tribe'' has the 
        meaning given the term ``Indian tribe'' in section 102 of the 
        Federally Recognized Indian Tribe List Act of 1994 (25 U.S.C. 
        5130).
            (2) Long covid.--The term ``Long COVID'' means health 
        conditions that may result, directly or indirectly, from COVID-
        19.
            (3) Urban indian organization.--The term ``urban Indian 
        organization'' has the meaning given such term in section 4 of 
        the Indian Health Care Improvement Act (25 U.S.C. 1603).
            (4) Tribal organization.--The term ``Tribal organization'' 
        means the recognized governing body of any Indian Tribe; any 
        legally established organization of Indians which is 
        controlled, sanctioned, or chartered by such governing body or 
        which is democratically elected by the adult members of the 
        Indian community to be served by such organization and which 
        includes the maximum participation of Indians in all phases of 
        its activities: Provided, That in any case where a contract is 
        let or grant made to an organization to perform services 
        benefitting more than one Indian Tribe, the approval of each 
        such Indian Tribe shall be a prerequisite to the letting or 
        making of such contract or grant.
                                 &lt;all&gt;
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