CARE for All Kidneys Act of 2021

I 117TH CONGRESS 1ST SESSION H. R. 3893 To improve kidney disease research, prevention, surveillance, and treatment in minority populations and rural and underserved communities, and for other purposes. IN THE HOUSE OF REPRESENTATIVES JUNE 15, 2021 Ms. BLUNT ROCHESTER (for herself and Mr. WENSTRUP) introduced the following bill; which was referred to the Committee on Energy and Commerce A BILL To improve kidney disease research, prevention, surveillance, and treatment in minority populations and rural and underserved communities, and for other purposes. Be it enacted by the Senate and House of Representa- 1 tives of the United States of America in Congress assembled, 2 SECTION 1. SHORT TITLE. 3 This Act may be cited as the ‘‘Coordination, Account- 4 ability, Research, and Equity for All Kidneys Act of 2021’’ 5 or the ‘‘CARE for All Kidneys Act of 2021’’. 6 VerDate Sep 11 2014 00:48 Jul 20, 2021 Jkt 019200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\H3893.IH H3893 pbinns on DSKJLVW7X2PROD with BILLS 2 •HR 3893 IH SEC. 2. KIDNEY DISEASE RESEARCH IN MINORITY POPU- 1 LATIONS AND RURAL AND UNDERSERVED 2 COMMUNITIES. 3 (a) IN GENERAL.—The Director of the National In- 4 stitutes of Health shall expand, intensify, and support on- 5 going research and other activities with respect to kidney 6 disease in minority populations and rural and underserved 7 communities. 8 (b) CONSULTATION.—The Director of the National 9 Institutes of Health shall carry out subsection (a) in con- 10 sultation with the Administrator of the Centers for Medi- 11 care & Medicaid Services, working with personnel of the 12 Centers who are responsible for chronic care management 13 activities and have expertise in kidney care. 14 (c) RESEARCH.— 15 (1) DESCRIPTION.—Research under subsection 16 (a) shall include investigation into— 17 (A) the causes of kidney disease, including 18 socioeconomic, geographic, clinical, environ- 19 mental, genetic, racial, ethnic, and other factors 20 that may contribute to increased rates of kidney 21 disease in minority populations and rural and 22 underserved communities; and 23 (B) the causes of increased incidence of 24 kidney disease complications in minority popu- 25 lations and rural and underserved communities, 26 VerDate Sep 11 2014 00:48 Jul 20, 2021 Jkt 019200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H3893.IH H3893 pbinns on DSKJLVW7X2PROD with BILLS 3 •HR 3893 IH and possible clinical and nonclinical (such as 1 food security, housing, and access to coverage) 2 interventions to decrease such incidence. 3 (2) INCLUSION OF PARTICIPANTS.—In con- 4 ducting and supporting research described in sub- 5 section (a), the Director of the National Institutes of 6 Health shall seek to include participants from mi- 7 nority populations and rural and underserved com- 8 munities as study subjects in clinical trials. 9 (d) REPORT.— 10 (1) IN GENERAL.—Not later than 6 months 11 after the date of enactment of this section, the Sec- 12 retary of Health and Human Services shall prepare 13 and submit to the Congress a report on Federal re- 14 search and public health activities with respect to 15 kidney disease in minority populations and rural and 16 underserved communities. 17 (2) CONTENTS.—The report under paragraph 18 (1) shall at minimum address each of the following: 19 (A) Research on kidney disease in minority 20 populations and rural and underserved commu- 21 nities, including such research on— 22 (i) socioeconomic, geographic, clinical, 23 environmental, genetic, racial, ethnic, and 24 other factors (such as food security, hous- 25 VerDate Sep 11 2014 00:48 Jul 20, 2021 Jkt 019200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H3893.IH H3893 pbinns on DSKJLVW7X2PROD with BILLS 4 •HR 3893 IH ing, and access to coverage) that may con- 1 tribute to increased rates of kidney disease 2 in minority populations and rural and un- 3 derserved communities; and 4 (ii) prevention and complications 5 among individuals within these populations 6 and communities who have already devel- 7 oped kidney disease. 8 (B) Surveillance and data collection on 9 kidney disease in minority populations and 10 rural and underserved communities, including 11 with respect to— 12 (i) efforts to better determine the 13 prevalence of kidney disease among Black, 14 Hispanic/Latino, and Asian-American and 15 Pacific Islander subgroups; and 16 (ii) efforts to coordinate data collec- 17 tion on the American Indian population. 18 (C) Community-based interventions to ad- 19 dress kidney disease targeting minority popu- 20 lations and rural and underserved communities, 21 including— 22 (i) the evidence base for such inter- 23 ventions; 24 VerDate Sep 11 2014 00:48 Jul 20, 2021 Jkt 019200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H3893.IH H3893 pbinns on DSKJLVW7X2PROD with BILLS 5 •HR 3893 IH (ii) the cultural appropriateness of 1 such interventions; and 2 (iii) efforts to educate the public on 3 the causes of kidney disease, the impor- 4 tance of maintaining kidney health, and 5 actions individuals can take to avoid kid- 6 ney disease. 7 (D) Education and training programs for 8 health professionals (including community 9 health workers) on the prevention and manage- 10 ment of kidney disease and its related complica- 11 tions that is supported by the Health Resources 12 and Services Administration, including such 13 programs supported by the Bureau of Health 14 Workforce, the Bureau of Primary Health Care, 15 and the Healthcare Systems Bureau. 16 SEC. 3. KIDNEY DISEASE ACTION PLAN. 17 (a) IN GENERAL.—The Assistant Secretary for 18 Health of the Department of Health and Human Services 19 shall conduct, support, and expand public health strate- 20 gies, prevention, diagnosis, surveillance, and public and 21 professional awareness activities regarding kidney disease. 22 (b) NATIONAL ACTION PLAN.— 23 (1) DEVELOPMENT.—Not later than 2 years 24 after the date of the enactment of this Act, the As- 25 VerDate Sep 11 2014 00:48 Jul 20, 2021 Jkt 019200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H3893.IH H3893 pbinns on DSKJLVW7X2PROD with BILLS 6 •HR 3893 IH sistant Secretary for Health of the Department of 1 Health and Human Services shall develop a national 2 action plan to address kidney disease in the United 3 States with participation from patients, caregivers, 4 health professionals, patient advocacy organizations, 5 researchers, providers, public health professionals, 6 and other stakeholders. 7 (2) CONTENTS.—At a minimum, such plan 8 shall include recommendations for— 9 (A) public health interventions for the pur- 10 pose of implementation of the national plan; 11 (B) biomedical, health services, and public 12 health research on kidney disease; and 13 (C) inclusion of kidney disease in the 14 health data collections of all Federal agencies. 15 (c) KIDNEY DISEASE PREVENTION PROGRAMS.—At 16 the conclusion of the development of the national action 17 plan under subsection (b), the Director of the National 18 Institute of Diabetes and Digestive and Kidney Disease 19 shall conduct public education and awareness activities 20 with patient and professional organizations to stimulate 21 earlier diagnosis and improve patient outcomes from treat- 22 ment of kidney disease. To the extent known and relevant, 23 such public education and awareness activities shall reflect 24 differences in kidney disease by cause (such as hyper- 25 VerDate Sep 11 2014 00:48 Jul 20, 2021 Jkt 019200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\H3893.IH H3893 pbinns on DSKJLVW7X2PROD with BILLS 7 •HR 3893 IH tension, diabetes, and polycystic kidney disease) and in- 1 clude a focus on outreach to undiagnosed and, as appro- 2 priate, minority populations and rural and underserved 3 communities. 4 (d) GRANTS FOR REDUCING BURDEN OF KIDNEY 5 DISEASE.—Beginning not later than 2 years after the 6 date of enactment of this Act, the Director of the Centers 7 for Disease Control and Prevention shall supplement and 8 expand upon the activities of the National Institute of Di- 9 abetes and Digestive and Kidney Disease by making 10 grants to nonprofit organizations, State and local jurisdic- 11 tions, and Indian Tribes for the purpose of reducing the 12 burden of kidney disease, especially in disproportionately 13 impacted communities, through public health interventions 14 and related activities. 15 (e) DEVELOPMENT OF BEST PRACTICES FOR DIAG- 16 NOSIS AND MANAGEMENT OF KIDNEY DISEASE.—Begin- 17 ning not later than 2 years after the date of enactment 18 of this Act, the Assistant Secretary for Health of the De- 19 partment of Health and Human Services shall— 20 (1) in coordination with the Centers for Disease 21 Control and Prevention, the Indian Health Service, 22 the Health Resources and Services Administration, 23 the Department of Veterans Affairs, dialysis pro- 24 viders, nephrologists, medical societies, and nursing 25 VerDate Sep 11 2014 00:48 Jul 20, 2021 Jkt 019200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\H3893.IH H3893 pbinns on DSKJLVW7X2PROD with BILLS 8 •HR 3893 IH groups, develop pilot programs to demonstrate best 1 practices for the diagnosis and management of kid- 2 ney disease; and 3 (2) design such pilot programs and best prac- 4 tices for use by— 5 (A) general practitioners, family physi- 6 cians, internal medicine practitioners, nurse 7 practitioners, and physician assistants in pri- 8 vate practice; and 9 (B) Federally qualified health centers, In- 10 dian reservations, prisons, community health 11 centers, and other primary care settings. 12 (f) DATA COLLECTION.—Not later than 180 days 13 after the date of enactment of this Act, the Director of 14 the National Institute of Diabetes and Digestive and Kid- 15 ney Disease and the Director of the Centers for Disease 16 Control and Prevention, acting jointly, shall assess the 17 depth and quality of information on kidney disease that 18 is collected in surveys and population studies conducted 19 by the Centers for Disease Control and Prevention, includ- 20 ing whether there are additional opportunities for informa- 21 tion to be collected in the National Health and Nutrition 22 Examination Survey, the National Health Interview Sur- 23 vey, and the Behavioral Risk Factors Surveillance System 24 surveys. The Director of the National Institute of Diabetes 25 VerDate Sep 11 2014 00:48 Jul 20, 2021 Jkt 019200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\H3893.IH H3893 pbinns on DSKJLVW7X2PROD with BILLS 9 •HR 3893 IH and Digestive and Kidney Disease shall include the results 1 of such assessment in the national action plan under sub- 2 section (b). 3 (g) AUTHORIZATION OF APPROPRIATIONS.—There 4 are authorized to be appropriated to carry out this sec- 5 tion— 6 (1) $1,000,000 for fiscal year 2022; 7 (2) $1,000,000 for fiscal year 2023; 8 (3) $1,000,000 for fiscal year 2024; 9 (4) $1,000,000 for fiscal year 2025; and 10 (5) $1,000,000 for fiscal year 2026. 11 SEC. 4. REPORT ON END-STAGE RENAL DISEASE (ESRD) 12 TREATMENT CHOICES (ETC) MODEL. 13 The Assistant Secretary for Health of the Depart- 14 ment of Health and Human Services shall— 15 (1) annually provide to the Congress a report 16 on how the end-stage renal disease treatment choices 17 model has affected minority populations and rural 18 and underserved communities; and 19 (2) in each such report, include the number and 20 percentage of people in home dialysis categorized by 21 race, ethnicity, gender, geographic location, and age. 22 VerDate Sep 11 2014 00:48 Jul 20, 2021 Jkt 019200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\H3893.IH H3893 pbinns on DSKJLVW7X2PROD with BILLS 10 •HR 3893 IH SEC. 5. INCREASING KIDNEY TRANSPLANTS IN MINORITY, 1 RURAL, AND UNDERSERVED COMMUNITIES. 2 (a) IN GENERAL.—The Director of the National In- 3 stitutes of Health shall expand, intensify, and support on- 4 going research and other activities with respect to kidney 5 transplants in minority populations and rural and under- 6 served communities. 7 (b) CONSULTATION.—The Director of the National 8 Institutes of Health shall carry out this section in con- 9 sultation with the Administrator of the Centers for Medi- 10 care & Medicaid Services, working with personnel of the 11 Centers who are responsible for chronic care management 12 activities and have expertise in kidney care. 13 (c) RESEARCH.—Research under subsection (a) shall 14 include investigation into— 15 (1) the causes of lower rates of kidney trans- 16 plants in minority, rural, and underserved commu- 17 nities, including socioeconomic, geographic, clinical, 18 environmental, genetic, racial, ethnic, and other fac- 19 tors that may contribute to lower rates of kidney 20 transplants in minority populations and rural and 21 underserved communities; and 22 (2) possible interventions to increase kidney 23 transplants. 24 (d) REPORT; COMPREHENSIVE PLAN.— 25 VerDate Sep 11 2014 00:48 Jul 20, 2021 Jkt 019200 PO 00000 Frm 00010 Fmt 6652 Sfmt 6201 E:\BILLS\H3893.IH H3893 pbinns on DSKJLVW7X2PROD with BILLS 11 •HR 3893 IH (1) IN GENERAL.—The Secretary of Health and 1 Human Services shall— 2 (A) prepare and submit to the Congress, 3 not later than 6 months after the date of enact- 4 ment of this section, a report on Federal re- 5 search and public health activities with respect 6 to kidney transplants as a treatment for end- 7 stage renal disease in minority populations and 8 rural and underserved communities; and 9 (B) develop and submit to the Congress, 10 not later than 1 year after the date of enact- 11 ment of this section, an effective and com- 12 prehensive Federal plan (including all appro- 13 priate Federal health programs) to increase the 14 number of kidney transplants in minority popu- 15 lations and rural and underserved communities. 16 (2) CONTENTS.—The report under paragraph 17 (1)(A) shall at minimum address each of the fol- 18 lowing: 19 (A) Research on kidney transplants in mi- 20 nority populations and rural and underserved 21 communities, including such research on finan- 22 cial, insurance coverage, genetic, behavioral, 23 and environmental factors. 24 VerDate Sep 11 2014 00:48 Jul 20, 2021 Jkt 019200 PO 00000 Frm 00011 Fmt 6652 Sfmt 6201 E:\BILLS\H3893.IH H3893 pbinns on DSKJLVW7X2PROD with BILLS 12 •HR 3893 IH (B) Surveillance and data collection on 1 kidney transplants in minority populations and 2 rural and underserved communities, including 3 with respect to— 4 (i) efforts to increase kidney trans- 5 plants among Black, Hispanic/Latino, 6 Asian-American, and Pacific Islander sub- 7 groups with end-stage renal disease; and 8 (ii) efforts to increase kidney trans- 9 plants in the American Indian population. 10 (C) Community-based efforts to increase 11 kidney transplants targe [Text truncated for display. 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