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Demographic Trends America's health in the 2]st Century must wrestle successfully with equity among the young and the aged and among social and ethnic groups. Lincoln Chen, 2020 Vision: Health in the 21st Century. Institute of Medicine 25th Ar~r~iversary Symposium The U.S. population is in the midst of major changes. ~ the next few decades, Americans will be getting older and living longer. Increasing ethnic and racial diversity will make He is- sue of diversity more pronounced, especially in those regions with higher concentrations of these populations. One decade Mom now, filthy one-~ird of the U.S. population will be composed of ethnic arid racial minonties; this growth is driven by both higher birth rates among m~nonty groups and significant levels of immigration. Urun- surance rates are likely to be negatively affected by these mends as the two highest in populations of uninsured children arid young adults- grow as part of the increase In m~nonties and immigrants. National arid local health care policies need to be sensitive to these charges arid the nature of Be populations they address. New Census Bureau projections anticipate that the over-65 age group, which now stands at roughly 35 million, will increase by nearly 5 million during the coming decade and double, to 70 million, by 2030. The over-85 age group will likewise double, to almost 9 million, by 2030. This unprecedented cohort of older people will 25

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Informing the Future: Critical Issues in Health 20 - ~5 In o - E . - 10- Q A - O- 1900 1910 1920 1930 1940 1950 1960 1970 1980 1990 2000 2010 2020 2030 2040 2050 Year Number of people 85 years old and older in the United States, 1900-2000. The population aged 85 and older is the fastest growing age group in the country. SOURCE: Nursing Staffin Hospitals and Nursing Homes: Is It Adequate?,1996; page 33. malce equally unprecedented demands on the health care system. More than 85 percent of people age 65 and older have hypertension, diabetes, or blood lipid disorders due to chronic disease. Already, the issue of access to prescription drugs is More than 85 percept of people age a national concern. Spending for 65 and ogler have hypertension, pharmaceuticals and other costly new diabetes, or blood lipid disorders services and products will filet growth due to chronic disease. in health expenditures arid increase pressure on public and private insur- ance arrangements. Chronic disease prevention and management will become more important, as will long-term care and other assisted- . . . .lvmg services. The nation's population also is becoming increasingly diverse. Census projections anticipate that the minority population will in- 26

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Demographic Trends crease by nearly 20 million during the next decade, reaching 140 mil- lion by 2030, when minorities will constitute 40 percent of the total population. Creasing diversity will likely contribute to a growth in the number of uninsured among the nonelderly population and widen health Although most poor families are disparities between whites and minon- white, higher proportions of ties (related, in part, to levels of uninsur- minority families are poor or have ance among minonties). Currently, an very low incomesa fact that has estimated 44 million Americans are un- significant implications for health. insured. More than one-third of Latinos, the fastest growing ethnic group in the country, lack public or private health insurance. Although most poor families are white, higher pro- portions of minority families are poor or have very low incomesa fact that has significant implications for health. The Institute of Medicine conducts a variety of studies that ad- dress cntical health issues that arise as the nation's population grows older and shifts in composition. HEALTH CARE NEEDS OF AN AGING POPULATION Who uses long-ter~n care? How have the characteristics of this popu- lation changed? What paths do people follow in long-term care? How can this care be improved? As mentioned in the previous section, Im- proving the Quality of Long-Term Care (2000), a study sponsored by the Robert Wood Johnson Foundation, provides a comprehensive look at the quality of care and quality of life in a variety of settings, including nursing homes, residential care facilities, home health agencies, and private residences where family members provide or direct most of the services. The report highlights the degree to which long-term care is changing to meet the needs of an increasingly di- verse clientele and to satisfy consumer desires to have more control over the location and kinds of services that are provided. It identifies cntical problems and offers recommendations for federal and state policymakers on setting and enforcing standards of care, strengthen- 27

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Informing the Future: Critical Issues in Health ing the caregiving workforce, reimbursement issues, and expanding the knowledge base to guide organizational arid individual caregivers in improving the quality of care. Older individuals arid their families enter the health care system with their own unique set of problems, conditions, and values. How can the needs and desires of each person be appropnately assessed and addressed in a rapidly changing health care environment? Health out- comes research, which studies the end results of the structure and pro- cesses of health care on the health and well-being of patients arid populations, has the potential of providing the measurement tools to make that assessment and the analytic knowledge to suggest ways of addressing the challenges posed. Health Outcomes for OIcler People: Questions for the Coming Decade (1996) considers what the fixture is likely to bring for America's older population and its health care sys- tem. The report proposes an agenda for health outcomes research and recommends the development of a "toolbox" of reliable, valid, and practical measurement tools for use in a variety of elderly populations, covering both health-related quality-of-life issues as well as satisfac- tion with care. The eventual goal is to provide older people with prac- tical information to assist in making unportant health choices. Many older people are never counseled to stop smok- ing, start exercising, or take other measures commonly urged on the young, despite clear evidence that such meas- ures help older people. When health professionals fad] to offer such care, they may be dooming elderly people to years of discomfort, isolation, or disability. The Second 50 Years: Promoting Health and Preventing Disability (1 992) provides a framework for protecting the quality of life for people over age 50. Taking its title from the second 50 years of the roughly 100-year human Many older people are never coun- life span, the report focuses on 13 ma" soled to stop smoking, start exer- cising, or take other measures commonly urged on the young, despite clear evidence that such measures help older people. 28 jor heal Treats to the elderly, exam- ining how each affects the older person arid how those effects might be miti- gated. It presents wide-ranging, practi- cal advice for health care providers,

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Demographic Trends policymakers, and other sectors of society. Recommendations range from changing national policies to changing the way elderly patients are interviewed in the doctor's office, and from encouraging city plan- ners to redesign the nation's urban environments to encouraging older persons to exercise, even providing them with specific exercises to help in becoming and remaining fit. ADVISING ON MEDICARE Many elderly people do not filly understand what the traditional Medi- care program covers, let alone what the newer health care delivery op- tions add to the mix. Developing an Information Infrastructure for the Medicare+Choice Program (1999) describes the best ways to help Medicare beneficiaries with their information needs in an environment of choice. The Health Care Financing Administration (HCFA), which administers Medicare, has primary responsibility for educating its nearly 40 million beneficiaries about the Medicare+Choice Program, which offers enrollees a wide range of health care options. The report outlines how HCFA, working with other government agencies and pri- vate-sector organizations, Carl organize education and marketing strate- g~es to build an information infrastructure that elderly beneficiaries will find helpful, customized to their needs, and trustworthy. The nation's health care delivery system is being challenged to accommodate the needs of the growing numbers of Americans with serious or complex medical problems. Of particular concern are strategies to finance the long-te~m provi- sion of complicated arrays of health and The nation's health care delivery other services required by these patients. system is being challenger! to Issues have arisen about ensuing access accommodate the needs of the to care and quality of care for individuals growing numbers of Americans with persistent, disabling, or progressively with serious or complex medical life-threatening medical conditions. Defi- problems. nition of Serious and Complex Medical Conditions (1999) provides guidance to caregivers and health plans in identifying patients with particularly complicated medical conditions, and it recommends a strategy for identifying individuals enrolled in 29

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Informing the Future: Critical Issues in Health health plans who would benefit from receiving intensive services. To provide efficient, high-quality care for these individuals, health care delivery systems must be able to deal with a diverse array of clinical, social, mental, and functional health issues, and they also must be ca- pable of working effectively with other community and social support systems. Congress in recent years has broadened Medicare coverage to in- clude some preventive services, such as breast-cancer screening, but cost concerns have often limited further extensions. Three TOM re- ports examine both the evidence for extending coverage and the cost to Medicare of doing so: Extending Medicare Coverage for Preventive and Other Serv- ices (2000) assesses skin-cancer screening, dental services for pa- tients with certain medical conditions, and eliminating the time limit on coverage of immunosuppressive drugs for transplant patients; it also identifies those areas in which the evidence supports expansion of Medi- care coverage. There is a solid case that Medicare should cover dental care that is effective in reducing infections and other complications associated with serious medical conditions arid their treatment. The report also concludes that the evidence for re- moving the current time limitation on coverage of immur~osuppres- sive drugs is strong. However, lack of evidence precludes other clear recommendations. Medicare should cover dental care that is effective in reducing infections and other complications associated with serious medical conditions and their treatment. The Role of Nutrition in Maintaining Health in the Nation's Elderly: Evaluating Coverage of Nutrition Services for the Medicare Population (2000) concludes that individualized nutrition counseling could improve health for many Medicare beneficianes. Poor nutrition is a major problem for many older Americans, and one that can con- tnbute to common chronic illnesses, such as cardiovascular disease, hypertension, and diabetes. Nutrition therapy should be a reimburs- able Medicare benefit upon referral from a physician, and registered dietitians should be the primary professionals to qualify for reim- 30

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Demographic Trends bursement for such services. The report offers a series of recommen- dations to eliminate the administrative barriers that now prevent wider use of nutrition therapy. Extending Medicare Reimbursement in Clinical Trials (2000) provides a medically and fiscally responsible framework for Medi- care to naY for routine care necessary dunna a beneficiayv's nartici- .. . .. . . . . ~ ~ ~ . . ~ . ~ . ^~ patron in clinical trials. L,mgs, devices, and procedures that are ettec- tive at preventing, diagnosing, or treating disease are the backbone of hiah-oualitY health care. and clinical trials are the means of finding __~_ _1 ~ ~ __ _ A_ ___ _ ~ _ ~ O . .. .. . . . . , ~ , out whether those interventions work and are sate. -lne report con- cludes that since Medicare has a stake in ensuring that medical inter- ventions it pays for are effective, it would be sound policy to remove any disincentives to the participation of Medicare recipients in clini- cal Dials. ADOLESCENT HEALTH Adolescents comprise another segment of the population that is un- dergoing dramatic changes, both increasing in number and ra- ciaVethnic diversity. To help them grow and develop, young people need the support of their families, neighborhoods, and communities. However, changing societal arid eco- nomic factors have had a significant To help them grow and develop, impact on the ability of families at all young people need the support of income levels to provide such supervi- their families, neighborhoods, and sion and guidance. Maintaining and communities. However, changing promoting adolescent health is further societal and economic factors challenged by the increasing number of have had a significant impact on young Americans an estimated 7 the ability offamilies et all income million (one-quarter of adolescents lo levels to provide such supervision to 17-years That engage in be- and guidance. haviors that put them at high risk for negative health and developmental outcomes, such as alcohol and other drug abuse, unintended pregnancy and fatherhood, or infection with a sexually transmitted disease, including HIV. Recent years have seen the escalation of youth violence' both in exposure and involve- ment. What strategies and approaches can help guide youth away ~ 1

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Informing the Future: Critical Issues in Health from unhealthy behaviors and unsafe practices and engage them in health promoting behaviors? The search for answers has revealed marry gaps in understanding how teenagers negotiate cntical transi- tions Tom childhood to adulthood. Why are some youthseven in communities struggling with the problems of poverty, cnme, drugs, and other negative influencesable to connect with social and eco- nomic networks that can help them become successful and productive adults, while others never gain access to or turn away Tom such net- works? The Board on Children, Youth, and Families currently has a project under way to review community-level programs to promote positive youth development. The committee report will be published in 2001 and provide findings and conclusions Named around the essential ele- ments of adolescent well-being and hearty development and linked to pro- gram features that contribute to a suc- cessfill transition Tom adolescence to adulthood. The report will examine what we know about the current land- scape of development programs for Amenca's youth, as well as how these programs are meeting their diverse needs with particular attention to racial, ethnic, and socioeconomic considerations. It will offer recommendations for policy, practice, and research to ensure that programs are well designed to meet young peo- ple's developmental needs arid evaluated according to the best theory and practice. Why are some youths . . . able to connect with social and economic networks that can help them be- come successful and productive adults, while others never gain ac- cess to or turn away from such networks? LOW-INCOME AND MINORITY POPULATIONS Even in this time of unprecedented prosperity and budget surpluses, there are many groups in the United States that fall outside the eco- nomic and medical mainstreamsparticularly the millions of low- income individuals with limited or no health insurance, as well as marry Medicaid beneficiaries and people who need special services. To address at least the basic health needs of these groups, the nation 32

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Demographic Trends has long relied on an institutional safety net system, a patchwork of hospitals, clinics, financing, and programs that vanes dramatically from community to community and state to state. This system has never been financially robust, but has continued to survive. Recently, however, a series of changes in the structure and financing of the U.S. health care system has inadvertently caused serious prob- lems for the safety net system. America's Health Care Safety Net: Intact but Endangered (2000) recommends steps to buttress the system in order to ensure access to care for disadvantaged arid underserved populations. Of key importance, there needs to be an independent, expert oversight body that will monitor the status of the safety net system and its ability to meet the needs of those who rely on its services. Such enhanced tracking capability will help to promote public accountability, as well as a more coordinated approach to data collection, technical assistance, and the application and dissemination of best practices. The TOM has a study under way to document the health effects of being uninsured in the Uniter! States. Sixty percent of today's 44 mil- lion uninsured live in families with incomes below 200 percent of the federal poverty line. Roughly 84 percent of the uninsured live in families headed by workers. Even among the poorest, those in families Assuming the continuation of with incomes less than the federal pov- current trends in the availability erty line, fewer than half (47 6 percent) and cost of employment-base~ of nonelderlY Amencans have nublicIv health insurance. immigration. and ~ . ~ sponsored health insurance. Assuming income support programs, the the cont~nuahon of current trends In the fraction of the population that is ava~lab~ty and cost of employment- uninsured will continue to rise based health insurance, immigration, over the next decade. and income support programs, the fraction of the population that is lmin- sured will continue to rise over the next decade. This group is at risk for poorer health, financial hardship, and significant strains on the family. Local and national communities also face health threats, bur- dens on public services and health care institutions, and distortions in

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Informing the Future: Critical Issues in Health labor and health care markets. These burdens are not uniformly dis- persed across the nation, but are concentrated in communities that are disproportionately poor, minority, and immigrant. The particular contribution of health insurance coverage to an individual's access to quality health care and the consequent differences in health status and quality of life is not widely understood. The TOM is beginning a 3 ~ year study, sponsored by the Robert Wood Johnson Foundation, that will produce a series of reports to improve understanding of the con- ~ . sequences ot umnsurance. The children of today offer a preview of the nation9s future citi- zens, workers, and parents. One of every five children under age IS living in the United States14 million, all told is an immigrant or has immigrant parents. Available evidence suggests that on Marty 34

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Demographic Trends measures of health and well-being, these children perfonn as well as or better than U.S.-born children with U.S.-bom parents. Over time and across generations, however, as immigrant children become part of the American society, many of these advantages do not appear to be sustained. From Generation to Generation: The Health and Well- Being of Children in Immigrant Families (1998) examines the many factors family size, fluency in English, parent employment, acculturation, delivery of health and social services, and public policies that shape the outlook for the lives of these children and youth. Among the findings, immigrant children experience a somewhat higher poverty rate, are more likely to live in overcrowded housing, and are three times as likely to lack health insurance coverage than are children in U.S.-born families. Immigrant children also are consid- erably less likely to visit a doctor on a regular basis. The report rec- ommends improved research and data collection that will advance knowledge about these children alla, as a result, increase their visibil- ity in current policy debates. FROM GENERATION _ ' .- _ . , _ . _,,., . , _. : .. ~ ' . _ . . n#H~ in ~ Fat _ I' Villa' 5;'j~ i'' i~ f ~o~ ~ c if 0. ~ Concerns about the heath and well-be~ng of children arid adoles- cents who live in poverty have grown as the nation has embarked on a major restructuring of welfare, income support, social service policies, and the health care delivery system. As such decisions are made, it is critical that public aIld private policymal~ers consider the most current research regarding the effects of poverty The association between poverty and welfare dependency on children. ant! poor child health outcomes The association between poverty and poor child health outcomes has been well documented, but less is known about the mechanisms through which poverty operates arid about which as- pects of poverty are most damaging. New Findings on Poverty cent Child Health arid Nutrition`: Summary of a Research Briefing (1998) examines what has been learned about the specific ways in which poverty affects the health of children arid youth, arid it considers next steps for research that will inform debates about welfare policy and health outcomes for poor children and adolescents. has been well documented, but less is known about the mecha- nisms through which poverty operates and about which aspects of poverty are most damaging. 35

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Informing the Future: Critical Issues in Health Children without insurance are of special concern because lack of access to health services may have lifetime consequences. America's Children: Health insurance arid Access to Care (1998) highlights the need to reduce both financial and nonfinancial barriers so that all children can have health insurance. Public and private insurers should Public and private insurers should be be encouraged to clevelop encouraged to develop affordable affordable products that address products that address the specific the specific needs of children, needs of children, including children including children with chronic with chronic conditions and special conclitions and special health care needs. health care needs. Yet even having health insurance will not guarantee utilization of proper care, and other steps, SUCh as providing assistance with child care and transportation, offering culturally appropriate services, and making use of informa- tion technology, will also be necessary to reach some populations with necessary services. To help address this problem, the federal government in 1997 cre- ated the State Children's Health Insurance Program (S CHIP) to allow states to provide child health assistance to uninsured, low-income children "in an effective and efficient manner." States liked SCHIP for the flexibility it offered in providing coverage and services In ways that reflect each state's unique circumstances and charactens- tics. Yet with so much variation possible, how will we know whether SCHIP is effective? Systems of Accountability: Implementing Chil- d~ren 's Health Insurance Programs (1998) examines the responsibili- ties of Confess, the federal government, and state governments to assure accountability for the quality of services provided to children under SCHIP. The report concludes that S CHIP offers an unprece- dented opportunity to move Tom the traditional monitoring and com- pliance models of health care, which focus on financial performance, to a quality-improvement mode! that can better improve access for uninsured children to appropriate health care services. Reaching this goal will require developing a perfonnance monitonug system at the federal level, as well as continuing support of efforts to improve indi- cators of children's health and well-being, including indicators for children with special health care needs. 36

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Demographic Trends Despite rapid improvements in the overall health of the U.S. population, racial and ethnic minorities generally experience higher rates of morbidity and mortality than nonminonties. Afiican- Americans, for example, experience the highest rates of mortality from heart disease, cancer, diabetes, and HIV/AIDS of any other racial or ethnic group. The reasons for these health status disparities are poorly understood, but may largely reflect socioeconomic differences and inadequate access to health care. Afiican Americans, Hispanics, and Asian Americans are less likely than whites to have health insur- ance, have more difficulty getting health care, and have fewer choices in where to receive care. Even at equivalent levels of access to care, however, minorities Despite rapic! improvements in are less likely to receive even routine medi- the overall health of the U.S. cat procedures and more likely to expert- population, racial and ethnic ence a lower quality of health services. For minorities generally experience example, Afiican Americans are less likely higher rates of morbidity and than whites to receive appropriate cardiac mortality than nonminorities. medication or to undergo coronary artery bypass surgery; they are less likely to receive hemodialysis and kidney transplantation; and, among patients hospitalized for pneumonia, they are less likely to receive such clinical services as radiographs and in- tensive care. The TOM is now conducting a study to assess the extent of differences in the kinds and quality of health care received by racial and ethnic m~nonties and nonminorities, evaluate the potential sources (e.g., provider attnbutes, patient attributes, or institutional and system attributes) of racial and ethnic differences in health care, arid recom- mend policies and practices to reduce health care dispanties. ASSESSING DISEASE TRENDS We know more about cancer prevention, detection, and treatment than ever before yet not all segments of the U.S. population have benefited to the fieriest extent possible from these advances. Some racial and ethnic minorities experience more cancer than the majority population, and poor people no matter their ethnicity~ften lack access to adequate cancer care. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and ~7

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Informing the Future: Critical Issues in Health the Medically Underserved (1999) documents the gaps existing in prevention and treatment and the absence of adequate research to un- derstand risk factors specific to cancer in minonties. The report offers recommendations regarding improving the collection of cancer- related data, particularly among ethnic minorities and the medically underserved; ensunug that clinical teals supported by the National Institutes of Health include participation by these special populations; disseminating research results to health professionals serving these groups; and increasing sensitivity to the issues of cancer survivorship. The United States is at a cntical juncture in fighting tuberculosis (TB). On the one hand, we have regained control of TB, which had reemerged in the late 1980s and early 1990s, after being brought under tighter control by the 1960s. On the other hand, we are particularly vulnerable again to the complacency and neglect that can come with declining numbers of cases. . . . given the global face of tuber- Ending Neglect: The Elimination of culosis, the United States must Tuberculosis in the United States increase its engagement with other `2000y details an action plan for fed- nations' efforts to control TB for oral and state governments, as well as both altruistic reasons and to help the private sector, to develop and im- reduce the total "reservoir" of plement intensified TB prevention and - n ec ion. treatment programs. Eliminating TB also will require accelerated research to identify new tools for managing the disease. And given the global face of tuberculosis, the United States must increase its engagement with other nations' efforts to control TB for both altruistic reasons and to help reduce the total "reservoir" of infection. numbers ot cases 38

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_ 1 Selected Recommendations Related to Changing Consumer Attitudes . . . Care at the End of Life: Policymakers, consumer groups, and pur- chasers of health care should work with practitioners and researchers to develop better strategies for improving care at the end of life and to hold health care organizations accountable for such care. A continu- ing public discussion is essential to develop a better understanding of the modern experience of dying and the options available to patients and families. (Approaching Death: improving Care at file End of Life) Information for Medicare Beneficiaries: Special and major efforts are needed to build the needed consumer-oriented information infra- structure for Medicare beneficiaries. (Leffer Report to the Administra- for of HCFA on Developing an /nformation /nfrastructure for the Medi- care+Choice Program) Managed Mental Health Services: Health Care Purchasers must be responsive to consumers and families and develop means of ensuring their meaningful participation in treatment decisions. (Managing Man- aged Care: Quality /mprovemenf in Behaviora/ Hea/fh) Long-Term Care: Federal and State governments should encourage the development of effective consumer advocacy and protection pro- grams by providing support for consumer education and information dissemination and for complaint resolution programs. Improving the Quality of Long-Term Care) Breast Implants: A national mode! of informed consent for women undergoing breast implantation should be developed, and the con- finuing effectiveness of the informed consent mode! should be moni- tored. (Safety of Silicone Breast /mp/ants)