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3 Policy INTRODUCTION In the previous chapters, the committee framed the numerous chal- lenges and opportunities for defining and measuring the determinants of living well with chronic illness. This chapter describes the associated chal- lenges of designing and implementing effective public policies aimed at living well with chronic illnesses. First, the chapter defines health policy, which is aimed at improving the delivery of health care (clinical medicine) and public health, and describes the need for better integration between the two fields. It includes a brief description about the barriers to developing effective health policy, includ- ing budgetary challenges, and the lack of systematic evidence-based policy assessment, evaluation, and surveillance. Next, the chapter identifies the range of public policies that have an impact on living well with chronic illness. Using Frieden’s pyramid of Fac- tors that Impact Health (Frieden, 2010) as a framework, the chapter sum- marizes a continuum of policies ranging from structural (or distal) policies, which have the largest impact on the broad population of those who are chronically ill, to individual-level (or proximal) policy interventions, which have a more targeted impact on a smaller number of people. Beginning with the base of Frieden’s pyramid (Frieden, 2010), the chap- ter highlights numerous public policies that have an impact on the ability of high-risk populations with chronic illnesses to live well. Numerous social policies have proven critical in maintaining function and independence for chronically ill populations who are most disadvantaged in terms of income 119
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120 LIVING WELL WITH CHRONIC ILLNESS and/or disability. The recent Institute of Medicine (IOM) report For the Public’s Health: Revitalizing Law and Policy to Meet New Challenges (2011) describes these policies and makes detailed recommendations about the need to review and revise various public health policies and laws in order to improve population health. Many of these policies and laws are designed to prevent illness in the general population and to help prevent further morbidity in those already chronically ill—for example, clean in- door air laws and smoking cessation interventions. Extending through the tip of Frieden’s pyramid, the chapter concludes with policies that impact health care delivery and self-care, also important in supporting those with chronic illness to live well. Recently passed fed- eral health reform, the Affordable Care Act (ACA), represents the most significant changes to health care policy since the passage of Medicare and Medicaid in 1965. Given the numerous provisions targeted to improving health care delivery and population health, the chapter describes aspects of the ACA that are particularly relevant to the well-being of those with chronic illness. Finally, in order to promote synergistic improvements in public poli- cies that have the potential to impact health, the chapter describes a broad Health in All Policies (HIAP) strategy that seeks to assess the health impli- cations from both health and nonhealth public- and private-sector policies. Defining Health Care (Clinical Medicine) and Public Health Policy In general, public policy refers to the “authoritative decisions made in the legislative, executive, or judicial branches of government that are intended to direct or influence the actions, behaviors, or decisions of oth- ers” (Longest and Huber, 2010). Health policy is the subset of public poli- cies that impacts health care delivery (clinical medicine) and public health (population health). Most health policy in the United States is health care (clinical medicine) policy, aimed at regulating or funding the loosely coordinated mechanisms for the financing, insurance, and delivery of individual-level health care ser- vices (Hardcastle et al., 2011; IOM, 2011; Shi and Singh, 2010). Whereas public health focuses on the health status of broad populations across gen- erations, clinical care focuses on individuals. The committee discussed the need to expand beyond this fairly simplistic view of health and in Chapter 1 provides a framework (Figure 1-1) for considering the relationship among determinants of health, the spectrum of health, and policies and other in- terventions that help those with chronic illness to “live well.” To the extent that Americans often think in terms of their individual health status rather than in terms of population health, it may be under- standable why policy makers focus on allocating resources and regulating
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121 POLICY policy in health care services. However, the health and well-being of the individual and the health of the population are interrelated and interde- pendent. Choucair (2011) suggests that “maintaining two disciplinary silos (public health and clinical medicine) is not the answer. Bridging the gap is critical if we are serious about improving the quality of life of our resi- dents. . . . [W]e will not be successful unless we translate what we learn in research all the way into public policy.” Many public policies that improve health, especially for those with chronic illness, could be provided more effectively and efficiently in a more integrated, better aligned health system (Hardcastle et al., 2011). The committee discusses the need for a more inte- grated health system in detail in Chapter 6 and provides several examples of partnerships among clinical care, public health, and community organiza- tions that promote health for those with chronic illness. Barriers to Effective Health Policy As expressed in the recent IOM report (2011), “now is a critical time to examine the role and usefulness of the law and public policy more broadly, both in and outside the health sector, in efforts to improve population health.” The report noted the need for improvements in public policy as a result of several factors, including but not limited to developments in the science of public health; the current economic crisis and severe budget cuts faced by local, state, and federal government; the lack of coordination of health policies and regulations; recent passage of federal health reform (the ACA); and increasing rates of obesity in the U.S. population. Defining the appropriate role of government, however, is at the heart of public policy making in the United States. Although Americans value their health, many also value their ability to make individual choices about their health care, health behavior, and quality of life. Accordingly, many policy makers place high priority on individual liberties and, concomitantly, a lim- ited role for government. Policy makers balance multiple competing public policy interests, made more challenging in the current economic climate in which competition for resources is high. For this reason, it is critical to integrate health care policy with public health policy and reframe them both to be consistent with other societal values, such as prosperity, economic development, long-term investment, and overall well-being. Reminding policy makers in all sectors of government that “businesses can rise and fall on the strength of their employees’ physical and mental health, which influence[s] levels of productivity and, ultimately, the economic outlook of employers” (IOM, 2011) will help to emphasize the economic implications of population health. Given that two-thirds of U.S. health care spending is consumed by just 28 percent of people who have two or more chronic illnesses (Anderson, 2010), the country can avoid unnecessary costs and
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122 LIVING WELL WITH CHRONIC ILLNESS poor health by addressing the underlying cause of illness (Hardcastle et al., 2011). The data and analytic methodology for assessing effective public policy is often lacking, and demonstrating causality between policy interventions and their intended outcome is difficult, especially for interventions that require longitudinal follow-up and assessment. The IOM report For the Public’s Health: Revitalizing Law and Policy to Meet New Challenges (2011) outlined several important large-scale policy initiatives targeting childhood disadvantage to prevent poor health in adulthood. Examples include “home health visiting programs, early stimulation in child care programs, and preschool settings (i.e., Early Head Start and Head Start)” (IOM, 2011). Yet questions about the long-term efficacy of many of these types of interventions remain (The Brookings Center on Children and Fami- lies and National Institute for Early Education Research, 2010). Chapter 4 provides a detailed description of a number of community-based initiatives aimed at improving the health and well-being of those with chronic illness. An added challenge to developing effective health policy, which is in itself an iterative cyclical process, is the fact that tracking and evaluating policy implementation and efficacy are not done in a systematic fashion at the state or federal level. Instead, surveillance of various public policies occurs across government, foundations, the private sector, and various nonprofit organizations. The Kaiser Family Foundation, the Robert Wood Johnson Foundation, the National Association for State Health Policy, and the Commonwealth Fund provide an abundance of information about current federal and state laws as they relate to chronic illness. In addition, such organizations as the Trust for America’s Health and the County Health Rankings help to inform local, state, and national policy across the deter- minants of multiple chronic conditions (MCCs). Yet, generally speaking, these organizations do not systematically assess how well specific state and federal laws are being implemented or how well they are working to achieve their stated goals. Alternatively, organizations focused on specific illnesses, such as the Arthritis Foundation, can effectively advocate for state and fed- eral policies that impact their constituencies. What is missing is widespread collaboration between these two extremes, as well as a focus on policies that pertain directly to well-being and quality of life. Many organizations are only beginning to work in a collective fashion to achieve similar policy goals, such as living well with chronic illness. Other nonprofit organizations, such as the National Council for State Legislatures (NCSL), track state policies that pertain to such chronic ill- nesses as diabetes. NCSL provides information about diabetes minimum coverage requirements for state-regulated health insurance policies, state Medicaid diabetes coverage terms and conditions, and an overview of fed- eral funding from the Centers for Disease Control and Prevention (CDC) to
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123 POLICY state-sponsored diabetes prevention and control programs (NCSL, 2011). In addition, NCSL, the National Governors Association, the National Academy for State Health Policy, and other groups also track other state- level health policy issues, such as state implementation of federal health reform. According to NCSL, at least 32 states have enacted and signed laws specific to ACA health insurance implementation as of July 2011. These laws cover a wide variety of issues in at least 15 categories. In addition to the need for better surveillance of public policy, research on the relationship between law and legal practices and population health and well-being is still developing (Burris et al., 2010). Moreover, questions about the cost-effectiveness of various health policies are paramount. Policy makers require evidence about effectiveness, projected outcomes, and value in order to judge the merits of proposed policies. However, concerns about using science to measure cost-effectiveness in health care delivery have led some policy makers to raise concerns about the rationing of health care services by the government (California Healthline, 2010). For the Public’s Health: Revitalizing Law and Policy to Meet New Challenges (IOM, 2011) extensively evaluated how research could be used to improve public policy surveillance. The committee suggested that “research on the comparative effectiveness and health impact of public health laws and policies could be conducted by documenting geographic variation and temporal change in population exposure to specific policy and legal interventions.” The com- mittee recommended that an interdisciplinary team of experts be given ap- propriate resources to evaluate evidence for outcome assessments of policies and regulations and derive new guidelines for setting evidence-based policy. Chapter 5 provides a detailed description and framework for chronic dis- ease surveillance that will be required to adequately evaluate policies aimed at helping those with chronic illness to live well. American Values in Public Policy Even as new research establishes that social and environmental factors significantly influence health status, Americans often question this world- view (IOM, 2011). For the Public’s Health: Revitalizing Law and Policy to Meet New Challenges (IOM, 2011) describes four “imperatives”—rescue, technology, visibility, and individualism—that influence American policy making. These imperatives tend to focus policy makers’ attention on crises or novel events that have a compelling narrative, and away from concepts more commonplace, such as “living well”: 1. Rescue imperative: people are more likely to feel emotionally con- nected to individual misfortune and circumstances, but less inclined to react to negative information conveyed in statistical terms.
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124 LIVING WELL WITH CHRONIC ILLNESS 2. Technology imperative: people find more appeal in cutting-edge biomedical technologies than in population-based interventions. 3. Visibility imperative: people take for granted public health activi- ties that occur “behind the scenes” unless a crisis arises, such as influenza. 4. Individualism imperative: Americans generally value individualism, favoring personal rights over public goods. CONTEXTUALIZING HEALTH POLICY INTERVENTIONS: FRIEDEN’S PYRAMID Although most interventions aimed to help people with chronic ill- ness live well focus on the individual, the Health Impact Pyramid (Figure 3-1) illustrates why interventions focused more on public health may be beneficial as well (Frieden, 2010). The base of Frieden’s pyramid includes health-related socioeconomic factors, with interventions aimed at reducing poverty and increasing educational levels. The next level of the pyramid Increasing Increasing Individual Population Impact Effort Needed Counseling and Education Clinical Interventions Long-Lasting Protective Interventions Changing the Context to Make Individuals’ Default Decisions Healthy Socioeconomic Factors FIGURE 3-1 Health Impact Pyramid. SOURCE: Frieden, T.R. 2010. A framework for public health action: The health impact pyramid. American Journal of Public Health 100(4):590–595. The Sheriden Press. 3-1.eps
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125 POLICY recommends changing the environmental context to prevent illness, using such interventions as water fluoridation and environmental changes to en- courage physical activity. The third level involves one-time, or infrequent, protective interventions, such as vaccines to prevent infectious disease. The fourth and fifth levels of the pyramid include clinical interventions and counseling/educational interventions. The intervention levels differ in both the individual effort needed for the intervention to be successful and their potential impact. Moving down the pyramid, there is an inverse relationship: individual effort required decreases as the population impact increases. Although more individual approaches may be appropriate for helping those with chronic illness manage illness-specific aspects of their health (e.g., counseling and reminder systems to encourage diabetic patients to adhere to medication regimens), interventions further down will be of benefit as well (e.g., increasing access to facilities for physical activity can help those with arthritis be more physically active and improve their physi- cal functioning). Each of these interventions can, and often does, have an impact on an individual’s overall well-being. Policies Aimed at Socioeconomic Factors Frieden’s pyramid (Figure 3-1) begins with a focus on socioeconomic factors. Persons with chronic illnesses need protection of their rights to ac- cessibility of services, programs, public facilities, transportation, housing, and other necessities for independent living and having a high quality of life in addition to their public health and health care needs. Federal policies, such as the Ticket to Work and Self-Sufficiency program within the Medic- aid system (Stapleton et al., 2008), or paid medical leave for employees and caregivers (Earle and Heymann, 2011) have proven instrumental in helping those with chronic illness live well. These policies range from providing income support to low-income and disabled individuals—such as the Social Security Amendments of 1956, which created the Social Security Disability Insurance (SSDI) program—to transportation policies that require all new American mass transit vehicles to come equipped with wheelchair lifts (for example, the Urban Mass Transportation Act, 1970), to tax policies that preclude fringe benefits, such as health insurance, from being counted as taxable income, to com- munity supports such as those provided through the Older Americans Act, such as nutrition assistance, home- and community-based services, as well as caregiver supports. The context of public law generally creates this en- vironment. Although many of these broad social policies are expensive to implement and increasingly difficult to expand when resources are scarce, research suggests that there are associated cost savings as well as increased quality of life. Full description of the numerous policies that impact quality
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126 LIVING WELL WITH CHRONIC ILLNESS BOX 3-1 Additional Examples of Public Policies That Impact Living Well with Chronic Illness Independent living support policy • 965—The (American) Vocational Rehabilitation Amendment authorizes 1 federal funds for construction of rehabilitation centers, expansion of existing vocational rehabilitation programs, and creation of the National Commis- sion on Architectural Barriers to Rehabilitation of the Handicapped. • 965—The Older Americans Act provides funding based primarily on the 1 percentage of an area’s population 60 and older for nutrition and supportive home- and community-based services, disease prevention/health promo- tion services, elder rights programs, the National Family Caregiver Support Program, and the Native American Caregiver Support Program. • 978—Title VII of the Rehabilitation Act Amendments established the first 1 federal funding for consumer-controlled independent living centers and the National Council of the Handicapped under the U.S. Department of Education. • 990—The Ryan White Comprehensive AIDS Resource Emergency Act 1 was meant to help communities cope with the HIV/AIDS epidemic. Transportation policies • 970—The Urban Mass Transportation Act requires all new American mass 1 transit vehicles to come equipped with wheelchair lifts. Although the Ameri- can Public Transportation Association delayed implementation, regulations were issued in 1990. of life is beyond the scope of this report. However, a number of significant policies that are critical to helping those with chronic illness and disability are provided (see Box 3-1). The Americans with Disabilities Act (ADA) of 1990 and the ADA Amendments Act of 2008 were considered national civil rights bills for people with disabilities. The scope of these laws includes the public sector (federal, state, and local governments) and the private sector (businesses with 15 or more employees), mandating “reasonable accommodations” for workers with disabilities. The ADA contains four mandate areas: employ- ment protection; public service, including transportation and accessibility; nondiscrimination in public accommodations and services offered by most private entities; and telecommunication services. Given the committee’s definition of “living well” as a self-perceived level of comfort, function,
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127 POLICY Privacy policies • 996—The Health Insurance Portability and Accountability Act provided the 1 first federal protections against genetic discrimination in health insurance. The act prohibited health insurers from excluding individuals from group coverage because of past or current medical problems, including genetic predisposition to certain diseases. • 008—The Genetic Information Nondiscrimination Act was designed to 2 prohibit the improper use of genetic information in health insurance and employment. The act prohibits group health plans and health insurers from denying coverage to a healthy individual or charging that person higher premiums based solely on a genetic predisposition to developing a disease in the future. The legislation also bars employers from using individuals’ genetic information when making hiring, firing, job placement, or promotion decisions. Access to health care policies • 965—Medicare and Medicaid, established through passage of the Social 1 Security Amendments of 1965, provides federally subsidized health care to disabled and elderly Americans covered by the Social Security program. These amendments changed the definition of disability under the Social Security Disability Insurance program from “of long continued and indefinite duration” to “expected to last for not less than 12 months.” and contentment with life, the role that the ADA has played in the lives of those with disability is immeasurable. Although the ADA has proven essential for those with chronic illness, its implementation has significant disparities by condition. More specifi- cally, analyses suggest that provisions of the ADA disproportionately under- protect people with psychiatric disabilities (Campbell, 1994). Research also has found that people with visual impairments rate the ADA lower than do people with hearing and mobility impairments (Hinton, 2003; Tucker, 1997). Furthermore, the “doubly disadvantaged,” those with poor educa- tion and job skills plus a disability, do not appear to benefit in the long term from the ADA (Daly, 1997). Overall, the ADA has narrowed the gaps among those with and without disabilities in the areas of education and political participation. However, the similar gap in employment has not narrowed. The employment rate for those of working age with a disability
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128 LIVING WELL WITH CHRONIC ILLNESS is 75 percent of those with a nonsevere disability and 31 percent of those with a severe disability. For those without a disability, the employment rate is 84 percent (U.S. Census Bureau, 2010). Other major concerns that impact the ability of those with chronic ill- ness to live well are income and housing: 27.9 percent of those of working age with disabilities live below the poverty level compared with 12.5 per- cent of the general population (U.S. Census Bureau, 2011). SSDI is avail- able to those who have worked long enough to pay taxes and are deemed disabled, and Social Security Income (SSI) is available for those deemed dis- abled and poor. Both programs require that (1) the recipient be deemed unable to complete work done previously or able to adjust to other work and (2) the disability persists for at least one year in duration. In 2008, the average SSDI payment was $12,048 per year, or 116 percent of the federal poverty level (FPL) for one person. Recent data suggest that for those on SSI income, housing costs consume somewhere between 60 and 140 percent of income (NAMI, 2010). Many with disabilities struggle to find affordable and accessible housing, despite the existence of disability-specific housing legislation and other U.S. Housing and Urban Development programs to provide affordable housing. Caregivers of those with chronic illness often struggle with maintaining their own health and well-being as they care for their loved one. The Family and Medical Leave Act entitles eligible covered employees up to 12 weeks of job-protected, unpaid leave during any 12-month period in order to care for family members with a serious health illness or their own serious health illness; the employee maintains group health benefits during this leave. Even for those with the ability to maintain a job, recent data suggest that one of the largest causes of home foreclosures is a medical crisis. Specifically, a study of those going through home foreclosure in four states found that medical crises contributed to half of all home foreclosure filings (Robertson et al., 2008). Public policies that address the next level of Frieden’s pyramid, chang- ing the context in order to make individuals’ default decisions healthy, include state and local clean indoor air and smoke-free laws and ordi- nances as well as state tobacco taxes. Although the role of government in U.S. health care delivery has long been a contentious one (Starr, 1982), the case of tobacco control illustrates that a chronic disease risk factor can be amenable to U.S. public policy intervention. Data from the CDC celebrate “the 58.2 percent decrease in the prevalence of smoking among adults since 1964 [which] ranks among the 10 great public health achievements of the 20th century” (IOM, 2011). As described in For the Public’s Health: Revitalizing Law and Policy to Meet New Challenges (IOM, 2011), “the tobacco story also provides a rich example of a suite of public health inter-
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129 POLICY ventions (including the power to tax and spend, indirect regulation through litigation, and intervening on the information environment), several of them public policies, to improve population health, specifically by reducing mortality and morbidity due to its use.” As outlined in the 2000 Surgeon General’s Reducing Tobacco Use report (HHS, 2000), beginning in 1950, “the series of Surgeon General’s reports began meticulous documentation of the biologic, epidemiologic, behavioral, pharmacologic, and cultural aspects of tobacco use. . . . The past several years have witnessed major initiatives in the legislative, regulatory, and legal arenas, with a complex set of results still not entirely resolved.” The strides made in tobacco control have a direct impact on improving the well-being of those both with and without chronic illness. Indeed, despite significant political obstacles, public health advocates have successfully developed and implemented public policy to prevent tobacco use at multiple levels of government. Halpin et al. (2010) outline a broad set of policies aimed at reducing demand for/restricting the supply of tobacco products that range from individual level interventions to broad societal interventions. Although the public health effort to lower tobacco use continues, the public policy lessons are generalizable to other areas in which policy action is needed in order to improve health outcomes. Specific policies include raising excise taxes on tobacco; lowering the cost of treat- ments for tobacco addiction; regulating exposure to environmental tobacco smoke; regulating the contents of tobacco products; regulating packaging and labeling; banning tobacco advertising, promotion, and sponsorship; prohibiting tobacco sales to minors; regulating physical access to tobacco products; and eliminating illicit tobacco trade (Halpin et al., 2010). Public policies that address the third level of Frieden’s pyramid and target long-lasting protective interventions include insurance mandates that require coverage of preventive services, like colonoscopies and immuniza- tions. Those with functional impairment or disability are particularly sus- ceptible to poor health behaviors given their mental, social, and economic burden as well as their family and caregiver stress. Growing evidence indicates that a comprehensive approach to prevention can save long-term health care costs, mitigate needless suffering, and improve overall well- being, but more evidence is needed to understand how these policies impact people with MCCs. Examples of public policies that prevent chronic disease in the general population and reduce morbidity in those already living with a chronic illness are highlighted in Box 3-2. Chapter 4 on community-based inter- vention provides additional details on policies and interventions that affect lifestyle behaviors, screening and vaccination, and other inventions such as self-help and disease management.
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140 LIVING WELL WITH CHRONIC ILLNESS plans, and projects in diverse economic sectors using quantitative, qualita- tive and participatory techniques” (WHO, [a]). In addition, HHS recom- mends HIAs as a planning resource for implementing Healthy People 2020, recognizing that HIAs can provide recommendations to increase positive health outcomes and minimize adverse health outcomes (CDC, [a]). As the definition suggests, an HIA can be applied to many different types of policy decisions. Doing an HIA of a policy may mean assessing the likely impacts of a federal, state, or local law; a regulation issued by an administrative agency at any of these levels; or the manner in which a law or regulation is implemented. An HIA of a plan could refer to any public- or private-sector plan, and an HIA of a project can refer to a wide range of construction, economic, or other projects. In general, an HIA is performed before the policy, plan, or project is implemented. The goal is to identify any potential impact on health before it is too late to change course. Although the emphasis of an HIA is often on preventing or mitigating any potential negative consequences, an HIA can also be used to optimize health benefits or to identify potential missed opportunities to improve health. A challenging but promising element of HIAs is the need to collaborate across sectors and disciplines. For example, an assessment of the potential health impact of a new highway project may require involvement of health, environmental, and transportation experts. The health experts alone may need to include epidemiologists, community health experts, and physicians. In addition, these experts must interact extensively with policy makers and community members in order to meaningfully assess potential impacts. This kind of interdisciplinary approach can lead to better decision making with regard to the current project. Furthermore, it can inform public health experts about a broad range of other policy areas, positioning them to bet- ter identify opportunities for health improvement in the future (Rajotte et al., 2011). CONCLUSION The challenge of living well with chronic illness is shared by individuals and families, communities, health care providers, workplaces, organiza- tions, and communities. Numerous public policies are critical to maintain- ing function and independence for chronically ill populations who are most disadvantaged in terms of income and/or disability for living well with chronic illness. These include important social policies and programs like SSI, SSDI, and the ADA, as well as numerous other public policies that create healthy environments in which to live. There are also a number of health care policies that directly impact those with chronic illness through better coordination of health care deliv-
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141 POLICY ery, many of which were included in recently passed federal health reform, the ACA. However, a system of coordinated policies and supports to assist those with chronic illness to live well is rare and not broadly considered by many policy makers. Better integration of health care policy and public health policy and assessing which policies are most effective at improving the function and well-being of those with chronic illness can ultimately lead to better health and economic outcomes. In order to assist those with chronic illness to live well, the model adopted by the committee for this report and outlined in Chapter 1 (Figure 1-1) highlights the need to understand the complicated relationship among myriad determinants of health, health policies and other interven- tions, and the spectrum of health status. Adopting a HIAP strategy provides an opportunity to apply this model. Given its interdisciplinary approach to policy making, the HIAP framework creates synergistic improvements in overall health status via the assessment of the health implications from both health and nonhealth public- and private-sector policies. As such, HIAP can help to integrate health care and public health policy and better coordinate with various social supports and programs that are critical in helping those with chronic illness to function independently and live well. RECOMMENDATIONS 7–8 The statement of task question asks what policy priorities could ad- vance efforts to improve life impacts of chronic disease. In response, the committee makes two recommendations, derived from the discussion above. Recommendation 7 The committee recommends that CDC routinely examine and adjust relevant policies to ensure that its public health chronic disease man- agement and control programs reflect the concepts and priorities em- bodied in the current health and insurance reform legislation that are aimed at improving the lives of individuals living with chronic illness. Recommendation 8 The committee recommends that the secretary of HHS and CDC ex- plore and test a HIAP approach with HIAs as a promising practice on a select set of major federal legislation, regulations, and policies, and evaluate its impact on health related quality of life, functional status, and relevant efficiencies over time.
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142 LIVING WELL WITH CHRONIC ILLNESS ANNEX 3-1 The Affordable Care Act: Provisions Impacting Chronic Illness Provision Description Title I Extension of Dependent Mandates all group health plans and health insurance Coverage issuers offering group or individual health insurance that Sec. 1001 also offers dependent coverage to allow dependents to remain on their parent’s health insurance until they turns 26 years of age. Appeals Process Group health plans and health insurance issuers Sec. 1001 offering group or individual health insurance coverage must implement an effective internal appeals process for coverage determinations and claims, including appropriate notice of the process and the availability of any consumer assistance to help enrollees navigate their appeals. The plan must allow enrollees to review their files, present evidence and testimony as part of the appeals process, and receive continued coverage pending the outcome of the appeal. Health Insurance Consumer Grants to states or Health Benefit Exchanges to establish, Information expand, or offer support for offices of health-consumer Sec. 1002 assistance or health insurance ombudsmen programs. National Diabetes Prevention Authorizes a national program focused on reducing Program preventable diabetes in at-risk, adult populations. Sec. 1050 Immediate Access to Insurance Temporary high-risk health insurance pools have for Uninsured Individuals with been established for individuals who have preexisting a Pre-existing Condition conditions and have been uninsured for at least 6 months. Sec. 1101 Pools provide health insurance coverage to eligible individuals; cover at least 65 percent of the costs of benefits; ensure that the out-of-pocket expense limit is no greater than the limit for high-deductible plans; vary premiums only by family structure, geography, actuarial value of the benefit, age, and tobacco use; and include an appeals process to enable individuals to appeal decisions under this section. Closing the Medicare Medicare beneficiaries who reached the Medicare Prescription Drug “Doughnut prescription drug coverage gap or “doughnut hole” in Hole” 2010 received a $250 rebate. To close the “doughnut Sec. 1101 hole,” coinsurance for generic drugs in the coverage gap will be reduced beginning in 2011, and a reduction in coinsurance for brand-name drugs in the gap begins in 2013.
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143 POLICY ANNEX 3-1 Continued Provision Description Affordable Choices of Health Each state must establish an American Health Benefit Benefit Plans (Exchanges) Exchange and a Small Business Health Options Program Sec. 1311 (SHOP) Exchange to facilitate the purchase of qualified health plans. Title II Medicaid Expansion: New eligibility for Medicaid beginning on January 1, Coverage for the Lowest 2014, for individuals under age 65 earning an income Income Populations that does not exceed 133 percent of the federal poverty Sec. 2001 level. Community First Choice An optional Medicaid benefit through which states could Option offer home- and community-based attendant services Sec. 2401 and supports to Medicaid beneficiaries with disabilities and whose income does not exceed 150 percent of the federal poverty line for activities of daily living beginning October 1, 2011. Removing Barriers to Home- This provision gives states the option to provide more and Community-Based types of services through a state plan amendment (rather Services than a Medicaid waiver) for qualified disabled Medicaid Sec. 2402 individuals. They can provide targeted services to specific populations and extend full Medicaid benefits to individuals receiving home- and community-based services, but they may not limit the number of individuals eligible for home- and community-based services. Money Follows the Person Extends the “Money Follows the Person Rebalancing Rebalancing Demonstration Demonstration” through September 30, 2016, and Program (MFP) adjusts the time period of required institutional residence Sec. 2403 (individuals must reside in an inpatient facility for no less than 90 consecutive days). Providing Federal Coverage The Federal Coordinated Care Office, housed in CMS, and Payment Coordination for will bring together officials of the Medicare and Medicaid Dual Eligible Beneficiaries programs to more effectively integrate benefits under Sec. 2602 these programs and to improve coordination between federal and state governments for individuals eligible for benefits under both Medicare and Medicaid (dual eligibles). State Option to Provide States have the option to amend their Medicaid benefits Health Homes for Enrollees to enroll Medicaid beneficiaries with chronic illnesses with Chronic Conditions into a health home selected by the beneficiary (including Sec. 2703 services that are provided by a designated provider, a team of health care professionals, or a health team). continued
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144 LIVING WELL WITH CHRONIC ILLNESS ANNEX 3-1 Continued Provision Description Title III Hospital Value-Based Establishes a value-based purchasing (VBP) program for Purchasing Program hospitals participating in Medicare starting in fiscal year Sec. 3001 2013. Under this program, a percentage of the hospital payment is tied to hospital performance on quality measures related to common and high-cost conditions. The National Strategy for A national strategy to improve the delivery of health care Quality Improvement in services, patient health outcomes, and population health, Health Care (“National including a comprehensive strategic plan to achieve Quality Strategy”) priorities identified by the HHS secretary. Sec. 3011 Center for Medicare & This new center will test various innovative payment Medicaid Innovation and service delivery models to determine how these Sec. 3021 models reduce program expenditures while preserving or enhancing the quality of care provided to individuals enrolled in Medicare, Medicaid, and the Children’s Health Insurance Program. Medicare Shared Savings A program that incentivizes groups of providers and Program suppliers to work together through accountable care Sec. 3022 organizations (ACOs) with the goal of promoting accountability, and thus better care coordination, for Medicare fee-for-service patient populations. National Pilot Program on A national pilot program encouraging hospitals, doctors, Payment Bundling and postacute care providers to improve patient care Sec. 3023 and achieve savings for the Medicare program through bundled payment models. Extension for Specialized Extends the Medicare Advantage Special Needs Plan Medicare Advantage Plans for (SNP) program through 2013. Special Needs Individuals Sec. 3205 Establishing Community Grants to states, state-designated entities, and Indian Health Teams to Support the tribes to establish community health teams. The health Patient-Centered Medical teams will make it possible for local primary care Home providers to better address disease prevention and chronic Sec. 3502 illness management by facilitating collaboration between these providers and existing community-based health resources. Medication Management A grant program for medication management services Services in Treatment of provided through the Patient Safety Research Center Chronic Disease (Section 3501) to aid pharmacists in implementing Sec. 3503 medication management services for the treatment of chronic illnesses.
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145 POLICY ANNEX 3-1 Continued Provision Description Patient Navigator System “Patient navigators” will coordinate health care services Sec. 3510 needed for the diagnosis and treatment of chronic illnesses. Patient navigators will also facilitate the involvement of community organizations in assisting individuals who are at risk for or who have chronic illnesses to receive better access to high-quality health care services. Title IV National Prevention Council The National Prevention, Health Promotion and Public Sec. 4001 Health Council’s main responsibilities will include coordination and leadership at the federal level and among all federal departments and agencies with respect to prevention, wellness, and health promotion practices, the public health system, and integrative health care in the United States; development of a national prevention strategy; and recommendations to the president and Congress concerning the nation’s most pressing health issues. Prevention and Public Health Establishes a Prevention and Public Health Fund in Fund HHS. The fund will provide for an expanded national Sec. 4002 investment in prevention and public health programs to improve health and help contain health care costs. Medicare Personalized Medicare must cover annual wellness visits and Prevention Plan personalized prevention plan services with the creation of Demonstration Project an individual plan that includes completion of a health Concerning Individualized risk assessment (HRA) and takes into account the results Wellness Plan of the HRA. Sec. 4103 Removal of Barriers to Medicare will pay 100 percent (waiving beneficiary Preventive Services in coinsurance and deductibles) for covered preventive Medicare services if the services are recommended with a grade of Sec. 4104 A or B by the U.S. Preventive Services Task Force. Improving Access to Medicaid diagnostic, screening, preventive, and Preventive Services for Eligible rehabilitation services are expanded to include approved Adults in Medicaid clinical preventive services, recommended adult Sec. 4106 vaccinations, and any medical and remedial services recommended by a physician for the maximum reduction of physical or mental disability and restoration of an individual to the best possible functional level. continued
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146 LIVING WELL WITH CHRONIC ILLNESS ANNEX 3-1 Continued Provision Description Incentives for Prevention of A program to award grants to states to provide incentives Chronic Disease in Medicaid for Medicaid beneficiaries who participate in programs Sec. 4108 and demonstrate changes in health risk and outcomes by meeting specific targets. Community Transformation Grants awarded to finance the policy, environmental, Grants programmatic, and infrastructure changes needed to Sec. 4201 promote healthy living and reduce disparities in the community. Healthy Aging, Living Well; Grants awarded to state or local health departments Evaluation of Community- for a 5-year pilot program to provide public health Based Prevention and Wellness and community interventions, community preventive Programs for Medicare screenings, clinical referrals for individuals with chronic Beneficiaries illness risk factors, and other preventive services to Sec. 4202 individuals who are between ages 55 and 64. Employer wellness programs Programs to expand use of evidence-based prevention and Sec. 4303 health promotion approaches in the workplace. Title V State Health Care Workforce A competitive health care workforce development Development Grants grant program to enable state partnerships to complete Sec. 5102 comprehensive planning and to carry out activities leading to coherent and comprehensive health care workforce development strategies at the state and local levels. First, for planning grants to help states plan for current and future health care workforce needs and, second, for implementation grants to help state partnerships implement activities that will result in a coherent and comprehensive plan for health care workforce development, addressing current and projected workforce demands in the state. Training Opportunities for A grant program to fund eligible entities to provide new Direct Care Workers training opportunities for direct care workers who are Sec. 5302 employed in long-term care settings and agree to work in the field of geriatrics, disability services, long-term services and supports, or chronic care management for a minimum of 2 years following completion of the assistance period. Grants to Promote the A grant program to support community health workers Community Health Workforce and to promote positive health behaviors and outcomes Sec. 5313 for populations in medically underserved communities.
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147 POLICY ANNEX 3-1 Continued Provision Description Co-Locating Primary and Grants for coordinated and integrated services through Specialty Care in Community- the colocation of primary and specialty care in Based Mental Health Settings community-based mental and behavioral health settings. Sec. 5604 Title VI Patient Centered Outcomes A private, nonprofit institute to advance research on the Research Institute comparative clinical effectiveness of health care services Sec. 6301(a) and procedures to prevent, diagnose, treat, monitor, and manage certain diseases, disorders, and health conditions. This research will assist patients, clinicians, purchasers, and policy makers in making informed health decisions.
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