108th Congress

Healthcare Equality and Accountability Act

H.R. 3459, S. 1833

Background

On October 21, 2003, Representative Elijah Cummings (D-MD), Chair of the Congressional Black Caucus (CBC); Representative Donna M. Christian-Christensen (D-VI), Chair of the CBC Health Braintrust; Senator Thomas A. Daschle (D-SD); Senator Edward M. Kennedy (D-MA); and Representative Nancy Pelosi (D-CA), along with leaders from the Congressional Hispanic Caucus, Congressional Asian Pacific American Caucus, and Congressional Native American Caucus, held a news conference to announce the bicameral introduction of H.R. 3459 and S. 1833, the Healthcare Equality and Accountability Act, to address minority health disparities. According to a press release for the event, the purpose of the legislation was “to increase health coverage for minority populations; address the need for improved culturally and linguistically appropriate care; increase the diversity of our healthcare workforce; reduce the occurrence of disease and disease-related complications suffered disproportionately by minorities; improve minority health data collection and reporting; increase accountability of our government institutions responsible for minority health; and strengthen the institutions that provide care to minority populations.”

Provisions of the Legislation/Impact on NIH

H.R. 3459 and S. 1833 each had eight titles. Title IV addressed the reduction of disease and disease-related complications. The following provisions were of interest to the National Institutes of Health (NIH):

Subtitle A—Eliminating Disparities in Prevention, Detection, and Treatment of Disease

• Chapter 1: Under the general provisions chapter, the Secretary of Health and Human Services (HHS), in coordination with the Director of NIH, Administrator of the Centers for Medicare and Medicaid Services, Administrator of the Health Resources and Services Administration (HRSA), Director of the Centers for Disease Control and Prevention (CDC), and Director of the U.S. Department of Health and Human Services (DHHS) Office of Minority Health, would have been required to award grants to eligible entities for the identification, implementation, and evaluation of programs for patients with chronic disease. The Secretary of HHS would have also been required to request that the Institute of Medicine commission a study to investigate promising strategies for improving minority health and reducing and eliminating racial and ethnic disparities in health and health care.
• Chapter 4: The National Cancer Institute, HRSA, and the Indian Health Service would have been authorized to make grants for model programs to provide prevention, early detection, treatment, and appropriate followup care services for cancer and chronic diseases to individuals from health disparity populations and make grants for patient navigators to assist individuals from health disparity populations in receiving such services. (See the article entitled “Patient Navigator, Outreach, and Chronic Disease Prevention Act,” August 2003.)
• Chapter 6: The Secretary of HHS, acting through the Administrator of HRSA and the Director of the DHHS Office of Minority Health and in cooperation with the Director of the National Center on Minority Health and Health Disparities (NCMHD), would have been authorized to make grants to partnerships of private and public entities to establish health empowerment zone programs in communities that disproportionately experience disparities in health status and health care in order to improve the health or environment of minority individuals. The purpose of the health empowerment zone program was to assist individuals, businesses, schools, minority health associations, nonprofit organizations, community-based organizations, hospitals, health care clinics, foundations, and other entities in communities that disproportionately experience disparities in health status and health care in accessing Federal programs and coordinating efforts to eliminate racial and ethnic disparities in health status and health care.

Subtitle B—Targeting Disease and Conditions With Particularly Disparate Impact

• Chapter 1: The provisions would have extended the preventive health measures pertaining to breast and cervical cancer under Section 1510(a) of the Public Health Service Act. The Secretary of HHS would have been given the authority to make grants specifically for cancer prevention and treatment for underserved minority and other populations.
• Chapter 2: Under this chapter, funding to carry out activities to expand the Minority HIV/AIDS Initiative would have been increased. It would have authorized $610,000,000 for fiscal year (FY) 2005 and such sums as may have been necessary for each of the FYs 2006 through 2010.
• Chapter 3: This section would have amended the Public Health Service Act to require the Secretary of HHS to support collaborations through the National Institute of Child Health and Human Development (NICHD) for the “Back to Sleep” campaign to reduce infant mortality. The Secretary, acting through the Director of NICHD, would have been required to convene a working group to develop health guidelines relating to infant mortality for use by childcare licensing entities. The working group would have reported to Congress on its progress 1 year after enactment of the Act.
• Chapter 4: The Secretary of HHS, acting through the Director of the National Institute on Alcohol Abuse and Alcoholism, would have been directed to research methods to quantify the central nervous system impairments associated with fetal alcohol exposure, develop clinical diagnostic tools for the intellectual and behavioral problems associated with fetal alcohol syndrome (FAS) and related diseases, develop a neurocognitive phenotype for FAS and alcohol-related neurodevelopmental disorder, and include all relevant scientific and clinical characterizations of FAS and related diseases in the relevant diagnostic codes.
• Chapter 5: This section addressed diabetes prevention and treatment. The Public Health Service Act would have been amended to require that the Diabetes Mellitus Interagency Coordinating Committee, in collaboration with the Directors of the National Human Genome Research Institute, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), and National Institute of Environmental Health Sciences (NIEHS), coordinate and assist the efforts of the Type 1 Diabetes Genetics Consortium. The Consortium would have collected and shared valuable DNA information from worldwide studies of type 1 diabetes patients and provided continued coordination of and support for the consortia of laboratories investigating the genomics of diabetes. Also, the Director of NIDDK, in coordination with the Director of NCMHD, the Director of the DHHS Office of Minority Health, and other appropriate Institutes and Centers, would have been directed to expand, intensify, and coordinate research programs on prediabetes and type 1 and type 2 diabetes in underserved populations and minority groups. The research would have included behavior, diet and physical activity, environmental factors related to type 2 diabetes that are unique to or more prevalent among underserved and high-risk populations, prevention of complications, and genetic studies of diabetes. In addition, the Secretary of HHS, acting through the Director of CDC and in consultation with the Director of NIH, would have been instructed to develop a sentinel system to collect data on the incidence and prevalence of type 1 diabetes and establish a national database for the data. The Secretary of HHS, acting through the Directors of CDC and NIDDK, would have also been directed to conduct long-term epidemiological studies in children with or at risk for diabetes.
• Chapter 6: Under this section, the Secretary of HHS, acting through the Directors of CDC and the National Heart, Lung, and Blood Institute (NHLBI), would have been directed to make grants for community-based interventions to encourage healthy lifestyles in order to reduce morbidity and mortality from heart disease. In addition, the Secretary would have been directed to carry out a national education and information campaign to promote stroke prevention and increase the number of stroke patients who seek immediate treatment.
• Chapter 7: This section addressed obesity and weight reduction. The Secretary of HHS, in collaboration with the Directors of CDC, HRSA, and NCMHD, would have been required to establish grant programs to prevent and treat overweight conditions and obesity in underserved populations. This section would have specifically required the Director of NCMHD to establish a grant program to support research in the following areas: behavioral and environmental causes, prevention and treatment interventions tailored to minority populations, disparities in the prevalence of obesity among racial and ethnic minority groups, development and dissemination of best practice guidelines for treatments tailored to gender and age groups within minority populations, and data collection and reporting.
• Chapter 9: This section would have authorized such sums as may have been necessary for NHLBI to carry out the National Asthma Education and Prevention Program (NAEPP), in addition to any other authorizations of appropriations that were available to NHLBI for NAEPP. The Secretary of HHS, acting through CDC and in consultation with NAEPP, would have been directed to compile data and conduct local surveillance activities on the prevalence and severity of asthma and on asthma management. Also, the Secretary of Education, in consultation with the Directors of NIH Institutes (including NHLBI) and CDC, would have been encouraged to make grants to local education agencies for programs to carry out asthma-related activities for the children attending their schools.
• Chapter 11: This section would have amended the Public Health Service Act to ensure that the autoimmune disease plan provisions address research on minority populations. It would have encouraged the development of information and education programs for patients and health care providers that address the environmental, hormonal, and genetic risk factors of autoimmune disease in minority populations. Outreach programs based on this information that are directed toward minority individuals and carried out through community health centers and community clinics would have also been encouraged.
• Chapter 15: TThis section would have required the Director of NIH to expand, intensify, and coordinate programs to conduct and support uterine fibroids research. The Director would have carried out these activities through the appropriate Institutes, Offices, and Centers, including NICHD, NIEHS, NCMHD, and the Office of Research on Women’s Health (ORWH). ORWH would have coordinated these activities among the Institutes, Offices, and Centers.

Status and Outlook

H.R. 3459 was introduced by Representative Cummings on November 6, 2003, and was referred to the House Committees on Energy and Commerce, on Education and the Workforce, on Resources, on the Judiciary, on Ways and Means, and on Agriculture. No further action occurred on this legislation during the 108th Congress.

S. 1833 was introduced by Senator Daschle on November 6, 2003, and was referred to the Senate Committee on Health, Education, Labor and Pensions. No further action occurred on this legislation during the 108th Congress.