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JULY 26, 2000

Good morning, Chairman Frist, Senator Kennedy and other Members of the Subcommittee. I am Dr. Ruth Kirschstein, the Acting Director of the National Institutes of Health (NIH). I have with me today Dr. John Ruffin, Director, Office of Research on Minority Health, and Dr. Vivian Pinn, Director, Office of Research on Women=s Health, NIH. Thank you for the opportunity to appear before you today to discuss health disparities, which I believe to be a significant public health problem.

The causes of health disparities are multiple. They include poverty, level of education, inadequate access to health care, lack of health insurance and societal discrimination, and lack of complete knowledge about the causes, treatment, and prevention of serious diseases disproportionately affecting differing populations. The causes are not genetic, except in rare cases such as sickle cell disease. All of us, regardless of race, have basically the same genetic construction.

The evidence of health disparities in this country is striking and beyond dispute. Just two weeks ago, the Federal Interagency Forum on Child and Family Statistics, 2000 released a comprehensive report measuring national indicators of well-being in America=s children. The report found that gauges of children=s well-being, such as mortality, teenage pregnancy and juvenile violence, are at their lowest rates in two decades. The Washington Post reported the news under the banner headline: AReport Paints Brighter Picture of Children=s Lives.@

Although it is true that indicators of children=s health contain good news, the report contained additional conclusions that have become all too familiar. While the picture was brighter for white children, the picture was dimmer for many minorities. For example, infant mortality nationwide among African Americans and Native Americans is more than twice as high as among whites and Hispanics.

This latest news is only one of a series of troubling findings that have been reported in recent years. The maternal mortality rate in the United States is four times higher among African-American mothers than among white mothers. Although the prevalence of asthma is only slightly higher in African-American children than in white children, African Americans experience greater disability and more frequent hospitalizations from complications of the illness. Mortality from coronary heart disease is 40 percent higher in African Americans than whites. The mortality rate from stroke in African Americans is nearly 80 percent higher than the rate among Caucasians. These disparities exist with virtually every major disease, including cancer, AIDS, end-stage renal disease, liver disease, tuberculosis, and osteoarthritis.

The Federal Government is engaged in multi-faceted initiatives designed to address health disparities in Americans. One America in the 21st Century: The President=s Initiative on Race, seeks to overcome racial division in our society. One goal of this effort is the reduction of health disparities among minorities by improving the health-care infrastructure and removing obstacles to the delivery of and access to health care among minority populations.

A second initiative is Healthy People 2010, a national program to promote wellness and disease prevention, which has the elimination of health disparities as one of its primary goals.

A third effort is the Department of Health and Human Services= Initiative to Eliminate Racial and Ethnic Disparities in Health, which has targeted six health disparities for elimination. The six are disparities in infant mortality, cancer screening and management, cardiovascular disease, diabetes, HIV/AIDS, and immunization.

The elimination of health disparities will require a cross-cutting effort, involving not only various components of the Federal Government, but the private sector as well. At NIH, we are committed to fulfilling our own role in the battle against health disparities. We have the responsibility to place special emphasis on those diseases and conditions that are major contributors to health disparities, with the goal of making measurable progress against these problems. We have the responsibility to ensure that the new knowledge we generate in our laboratories and our clinics benefits all our citizens and all our communities. We also have the responsibility to attract and train the next generation of scientists and health care professionals to ensure that we will have the culturally and ethnically diverse work force in research and medicine that is essential to eliminating health disparities.

NIH has a history of addressing health disparities through its Institutes and Centers through a number of targeted programs and research projects. More recently, health disparities has been an area of increased research emphasis and a budget priority at NIH. Ten years ago, the Office of Research on Minority Health was established. With the support of the Congress, we have devoted significant resources to health disparities research. We have substantially increased the numbers of minorities participating in NIH-sponsored clinical trials. We are training minority scientists. NIH is funding partnerships between Historically Black Colleges and Universities and Institutions that have a longer history of NIH support.

However, as long as health disparities exist, and in some cases continue to widen, more could be done. Today, I want to emphasize what we are doing now, and what we will do in the future.

Scientific research is all about trying new approaches when current ideas do not achieve expected results. This philosophy applies to health disparities. We have made strides in some areas, but we will not rest until health disparities no longer exist - - period. It is clear that we need a different approach.

The Administration has proposed to create a coordinating center in the FY 2001 Budget and legislative authority for the Office of Research on Minority Health to award grants in certain circumstances. We would also support the creation of a national center for research on minority health and health disparities as proposed in S.1880 and H.R. 3250.

While we envision authority for the Center to award grants to fill- in research gaps and build capacity at research institutions, its major role would be to coordinate the efforts of all Institutes and Centers at the NIH. I believe the primary research on diseases that result in health disparities must remain at the Institutes and Centers with expertise in disease-specific research. Research on cardiovascular disease that has a disproportionate impact on minorities, should continue to be led by the National Heart, Lung and Blood Institute. Research on HIV/AIDS that afflicts minorities more than nonminorities should be led by the National Institute of Allergy and Infectious Diseases and the Office of AIDS Research. Research on cancer, another illness resulting in health disparities, should be led by the National Cancer Institute. But NIH must do a better job of coordinating such research among the various Institutes and Centers, and we believe our initiative will do just that.

For the past six months, NIH has been developing a comprehensive Strategic Plan to Reduce and Ultimately Eliminate Health Disparities. The Plan, which for the first time will coordinate the research resources of the NIH Institutes and Centers, is currently in draft form and is being reviewed by the outside advisory committee of the NIH Office of Research on Minority Health. The goal is for the Strategic Plan to be ready for submission as part of the NIH Fiscal Year 2002 budget, as an outline of the NIH=s priorities and commitment to research on health disparities. The Plan sets forth the NIH objectives for reducing and eliminating health disparities over the next five years. The plan focuses on three major areas: 1) research; 2) research infrastructure; and 3) public information, outreach and education.

Any discussion of health disparities would be incomplete without including women=s health. Our efforts to include more women in NIH-funded studies were invigorated by passage of the 1993 NIH Revitalization Act, which required that researchers look for sex-based differences in clinical studies of drugs and other interventions. Under the leadership of the Office of Research on Women=s Health, NIH developed and issued new guidelines to the scientific community. Full implementation of these guidelines was accomplished by the end of 1995. The impact of the guidelines is not yet fully known because clinical trials are not yet available for analysis. We intend to monitor closely the results of these trials as they are completed to ensure compliance with the guidelines.

Two months ago, the General Accounting Office issued a report entitled: NIH Has Increased Its Efforts to Include Women in Research. I am pleased with the report=s overall conclusion that NIH has made great strides in women=s health research. The report did contain one criticism, that NIH had not ensured that research be designed to allow sex-based analysis of results. Unfortunately, GAO reviewed unpublished reports based on research that occurred before the new requirements were enacted. Let me assure you that the requirements, which were mandated in the 1993 NIH Revitalization Act, are being met. Both Dr. Pinn and I are committed to ensuring this throughout our entire portfolio at NIH.

Meanwhile, data from 1998, the most recent available, show that nearly 67 percent of all participants in NIH-supported research were women. We are confident that women are being

included in clinical trials in large and increasing numbers. We are currently enhancing a new NIH-wide system for tracking clinical trial data to ensure that women are accurately counted.

As we proceed, we intend to work with this Subcommittee and other congressional panels to ensure that our approaches to health disparity research, including women=s research, have public input, and receive priority.

Thank you for the opportunity to testify. I will be pleased to answer any questions that you may have.

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