I 118th CONGRESS 1st Session H. R. 1616 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.

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 . 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. 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. 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. 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. 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. 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.