2

The Current Cancer Care Landscape: An Imperative for Change

This chapter documents the major drivers creating an imperative for change in the cancer care delivery system: (1) the changing demographics in the United States and the increasing number of cancer diagnoses and cancer survivors and (2) the challenges and opportunities in cancer care, including trends in cancer treatment, unique considerations in treating older adults with cancer, unsustainable cancer care costs, and federal efforts to reform health care. The chapter concludes with a section outlining the key stakeholders who will be responsible for transforming the cancer care delivery system, setting the stage for the report’s subsequent chapters, which address the committee’s recommendations for overcoming challenges to delivering high-quality cancer care.

CANCER DEMOGRAPHICS

The changing demographics in the United States will exacerbate the most pressing challenges to delivering high-quality cancer care. From 2010 to 2050, the United States is expected to grow from more than 300 million to 439 million people, an increase of 42 percent (Vincent and Velkoff, 2010). Although the overall growth rate of the population is slowing, the older adult population, defined in this report as individuals over the age of 65, continues to experience remarkable growth (Mather, 2012; Smith et al., 2009). The diversity of the population is also increasing (Smith et al., 2009). This section explores these trends in detail as well as trends in cancer diagnosis and survivorship.



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2 The Current Cancer Care Landscape: An Imperative for Change T his chapter documents the major drivers creating an imperative for change in the cancer care delivery system: (1) the changing demo- graphics in the United States and the increasing number of cancer diagnoses and cancer survivors and (2) the challenges and opportunities in cancer care, including trends in cancer treatment, unique consider- ations in treating older adults with cancer, unsustainable cancer care costs, and federal efforts to reform health care. The chapter concludes with a section outlining the key stakeholders who will be responsible for trans- forming the cancer care delivery system, setting the stage for the report’s subsequent chapters, which address the committee’s recommendations for overcoming challenges to delivering high-quality cancer care. Cancer Demographics The changing demographics in the United States will exacerbate the most pressing challenges to delivering high-quality cancer care. From 2010 to 2050, the United States is expected to grow from more than 300 million to 439 million people, an increase of 42 percent (Vincent and Velkoff, 2010). Although the overall growth rate of the population is slowing, the older adult population, defined in this report as individuals over the age of 65, continues to experience remarkable growth (Mather, 2012; Smith et al., 2009). The diversity of the population is also increasing (Smith et al., 2009). This section explores these trends in detail as well as trends in cancer diagnosis and survivorship. 43

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44 DELIVERING HIGH-QUALITY CANCER CARE The Aging Population Between 1980 and 2000, the older adult population grew from 25 mil- lion to 35 million and it is expected to comprise an even larger proportion of the population in the future (Smith et al., 2009). Projections show that by 2030, nearly one in five U.S. residents will be age 65 and older. By 2050, the older adult population is expected to reach 88.5 million, more than double that in 2010 (Vincent and Velkoff, 2010). The baby boomer genera- tion, the first of whom turned 65 in 2011, is largely responsible for the projected population increase. As the baby boomer generation ages, the older adult population over 85 years will rapidly increase: in 2010, around 14 percent of older adults were 85 years of age and older; by 2050, that proportion is expected to grow to more than 21 percent (see Figure 2-1) (Vincent and Velkoff, 2010). Thus, not only is the U.S. population getting older, the older adult population is getting older. Increasing Diversity of the Population Growing racial and ethnic diversity in the United States are important demographic trends influencing the delivery of high-quality cancer care. The two major factors contributing to this increasing diversity include (1) immigration and (2) differences in fertility and mortality rates (Shrestha and Heisler, 2011). From 1980 to 2000, racial and ethnic minorities (i.e., non-White) grew from 46 million to 83 million and are expected to expand 100 85 years and over 90 80 80 to 84 years 70 75 to 79 years 60 Percent 50 40 70 to 74 years 30 20 65 to 69 years 10 0 2010 2020 2030 2040 2050 Year FIGURE 2-1  Distribution of the projected older population by age in the United States, 2010 to 2050. NOTE: Vertical line indicates the year that each age group is the largest proportion Figure 2-1 of the older population. Data are from the U.S. Census Bureau’s 2008 National Population Projections. R02518 SOURCE: Vincent and Velkoff, 2010. editable vector

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THE CURRENT CANCER CARE LANDSCAPE 45 to 157 million by 2030 (see Table 2-1 and Figure 2-2) (Smith et al., 2009). 1 The Hispanic population, for example, is one of the fastest-growing seg- ments of the U.S. population; if current demographic trends continue, the proportion of Hispanic individuals will rise from 12.6 percent of the population in 2000 to 30.2 percent in 2050 (Shrestha and Heisler, 2011). Racial and ethnic minorities are much younger than the overall U.S. population. As a result, the older adult population in the United States is not as racially and ethnically diverse as the U.S. population as a whole. As the minority population ages over the next four decades, the older adult population is expected to become more diverse. Minorities are projected to comprise 42 percent of the older adult population by 2050, a 20 percent increase from 2010 (Vincent and Velkoff, 2010). The Hispanic population age 65 and older is projected to increase by more than sixfold from 2010 to 2050, compared to the non-Hispanic population, which is expected to double during this same time period (Vincent and Velkoff, 2010). The male-to-female ratio in the older adult population is also expected to shift in the coming decades. The U.S. population has traditionally in- cluded more females than males due to women’s longer life expectancy. With the life expectancy among males quickly rising, the percentage of females 65 years and older will decrease from 57 percent of the older population in 2010 to 55 percent in 2050 (Vincent and Velkoff, 2010). Trends in Cancer Diagnoses From 1980 to 2000, the U.S. population grew from 227 million to 279 million (a 23 percent increase). During that same time period, the total yearly cancer incidence increased from 807,000 to 1.34 million (a 66 per- cent increase) (Smith et al., 2009). Future projections indicate that between 2010 and 2030, the U.S. population will increase from 305 million to 365 million (a 19 percent increase), while the total cancer incidence will rise from 1.6 million to 2.3 million (a 45 percent increase) (Smith et al., 2009). Thus, the incidence of cancer is rapidly increasing (see Figure 2-3). Men are more likely than women are to be diagnosed with cancer. Current estimates place the overall lifetime risk of developing cancer in men at around one in two and for women around one in three; the incidence rate for all cancers combined is 33 percent higher in men than in women (ACS, 2012b; Eheman et al., 2012). More than 1.6 million in- dividuals will be diagnosed with cancer in 2013 (854,790 in men and 805,500 in women) (NCI, 2013a). The three most common cancers in men 1  Federal standards for collecting information on race and Hispanic origin were estab- lished by the Office of Management and Budget in 1997 and revised in 2003. Race and ethnic- ity are discussed as distinct concepts in this report (OMH, 2010; Shrestha and Heisler, 2011).

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46 TABLE 2-1  Projected U.S. Population, by Race: 2000-2050 Population 2000 2010 2020 2030 2040 2050 Total 282,125 310,233 341,387 373,504 405,655 439,010 (100.0) (100.0) (100.0) (100.0) (100.0) (100.0) White alone 228,548 246,630 266,275 286,109 305,247 324,800 (81.0) (79.5) (78.0) (76.6) (75.2) (74.0) African American alone 35,818 39,909 44,389 48,728 52,868 56,944 (12.7) (12.9) (13.0) (13.0) (13.0) (13.0) Asian alone 10,684 14,415 18,756 23,586 28,836 34,399 (3.8) (4.6) (5.5) (6.3) (7.1) (7.8) All other races 7,075 9,279 11,967 15,081 18,704 22,867 (2.5) (3.0) (3.5) (4.0) (4.6) (5.2) NOTES: In thousands, except as indicated. Resident population. Numbers may not add due to rounding. SOURCE: Shrestha and Heisler, 2009.

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THE CURRENT CANCER CARE LANDSCAPE 47 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% 2000 2010 2020 2030 2040 2050 Hispanic Non-Hispanic FIGURE 2-2  Hispanics and non-Hispanics as a percentage of the U.S. population, 2000-2050. NOTE: For the years 2010-2050, data are from the U.S. Census Bureau’s 2008 National Population Projections. For 2000, data are from Congressional Research Service extractions from the U.S. Census Bureau’s 2004 U.S. Interim National Population Projections. SOURCE: Shrestha and Heisler, 2011. Figure 2-2 are prostate, lung, and colorectal cancer, and the three most common in R02518 women are breast, lung, and colorectal cancer (CDC, 2012a,b). The greater vector editable incidence of cancer in men is often attributed to higher rates of tobacco use, obesity, physical inactivity, and prostate-specific antigen screening (Andriole et al., 2012; CDC, 2013; KFF, 2013b). Some minority populations are at an increased risk for cancer (IOM, 1999) (see Table 2-2). African American men consistently have the highest cancer incidence rate of all racial and ethnic groups, with overall rates 15 percent higher than for white men and almost twice that for Asian/Pacific Islander men (Eheman et al., 2012). In addition, the cancer incidence rate is expected to grow faster among racial and ethnic minorities than for Whites (Smith et al., 2009). From 2010 to 2030, the percentage of cancers diagnosed in racial and ethnic minorities is expected to increase from 21 to 28 percent of all cancers (Smith et al., 2009). The causes of these racial and ethnic disparities in risk are complex and overlapping, and they can

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48 DELIVERING HIGH-QUALITY CANCER CARE A 1,800 1,600 1,400 White Cases (x1.000) 1,200 Black 1,000 Asian-PI 800 AI-AN Multiracial 600 Hispanic 400 200 2000 2005 2010 2015 2020 2025 2030 Year B 160 140 120 Percent Change 100 80 60 40 20 2010 2015 2020 2025 2030 Year FIGURE 2-3  Projected cases (A) and percent change (B) of all invasive cancers in the United States by race and ethnicity. NOTE: AI = American Indian; AN = Alaska Native; PI = Pacific Islander. SOURCE: Smith, B. et al: J Clin Oncol 27(17), 2009: 2758-2765. Reprinted with permission. © 2009 American Society of Clinical Oncology. All rights reserved. Figure 2-3 R02518 bitmapped uneditable

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THE CURRENT CANCER CARE LANDSCAPE 49 TABLE 2-2  Cancer Incidence Rates by Race, 2006-2010, from 18 SEER Geographic Areas Cancer Incidence Rates by Race and Ethnicity Race/Ethnicity Male Female All Races 535.9 per 100,000 men 411.2 per 100,000 women White 539.1 per 100,000 men 424.4 per 100,000 women African American 610.4 per 100,000 men 397.5 per 100,000 women Asian/Pacific Islander 335.06 per 100,000 men 291.5 per 100,000 women American Indian/ 351.3 per 100,000 men 306.5 per 100,000 women Alaska Native Hispanic 409.7 per 100,000 men 323.2 per 100,000 women NOTE: SEER = Surveillance, Epidemiology, and End Results program. SOURCE: NCI, 2013a. include socioeconomic status (SES); unequal access to care; differences in behavioral, environmental, and genetic risk factors; and social and cultural biases that influence the quality of care (AACR, 2012; ACS, 2011). SES is another predictor of cancer incidence and morbidity (Clegg et al., 2009). People with lower SES are disproportionately affected by many cancers, including lung, late-stage prostate, and late-stage female breast cancer (ACSCAN, 2009; Booth et al., 2010; Clegg et al., 2009). These disparities in people with lower SES are often attributed to differences in cancer preventive behaviors, health insurance status, and an inability to access and afford timely screening and appropriate follow-up care (ACSCAN, 2009). Finally, one of the strongest risk factors for cancer is age (see Figure 2-4) (ACS, 2012b; NCI, 2013a). The median age for a cancer diagnosis is 66 years of age (NCI, 2013a). In general, as age increases, cancer incidence and mortality increase (NCI, 2013a). As more of the population reaches 65 years of age, cancer incidence is expected to increase. Trends in Cancer Survivorship The Institute of Medicine previously adopted the National Coalition for Cancer Survivorship’s definition of a cancer survivor as a person who has been diagnosed with cancer, from the time of diagnosis through the balance of life (IOM and NRC, 2005). Since the “war on cancer” began in 1971, changes in screening and treatment have contributed to an almost fourfold increase in the number of survivors (NCI, 2012a; Parry et al., 2011). Out of a U.S. population of more than 300 million people, approxi- mately 14 million people are cancer survivors (see Table 2-3) (ACS, 2012c;

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50 DELIVERING HIGH-QUALITY CANCER CARE 30 Percent of Cancer Patients 25 20 15 Incidence 10 Mortality 5 0 under 20 20-34 35-44 45-54 55-64 65-74 75-84 85+ Age (years) FIGURE 2-4  Age-specific incidence and mortality rates for all cancers combined, 2006-2010. SOURCE: NCI, 2013a. U.S. Census Bureau, 2013). Projections estimate that the total number of cancer survivors will reach 18 million (8.8 million males and 9.2 million females) by 2022 (see Figure Figure 2-42012c; de Moor et al., 2013). 2-5) (ACS, Average survival time following a cancer diagnosis is growing lon- R02518 ger. As a result, there are more adults living with a history of cancer vector editable throughout their lifetime (Parry et al., 2011). In the current population of cancer survivors, 64 percent were diagnosed more than 5 years ago and 15 percent were diagnosed more than two decades ago (ACS, 2012c). The majority of these survivors are older adults (ACS, 2012c; Parry et al., 2011). In addition, the number of cancer survivors over the age of 65 years is expected to increase at a faster rate than for any other age group; by 2020, 11 million cancer survivors will be older adults, a 42 percent increase from 2010 (Parry et al., 2011). Box 4-3 in Chapter 4 discusses various workforce strategies that are being utilized to care for this growing population of cancer survivors. The increases in survival following a cancer diagnosis, however, have not been equitable across all segments of the population (IOM, 1999). Recent policy initiatives, such as the Patient Protection and Affordable Care Act (ACA)2 provision on understanding health care disparities (see Annex 2-1) and the Healthy People 2020 initiative, are designed to gather data on health care disparities and promote health equity. Current data indicate that there are major disparities in cancer outcomes among people 2  Patient Protection and Affordable Care Act, Public Law 111-148, 111th Congress (March 23, 2010).

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THE CURRENT CANCER CARE LANDSCAPE 51 TABLE 2-3  Estimated Number of U.S. Cancer Survivors by Sex and Age as of January 1, 2012 Male Female Number Percent Number Percent All ages 6,442,280 7,241,570 0-14 36,770 1 21,740 <1 15-19 24,860 <1 23,810 <1 20-29 74,790 1 105,110 1 30-39 134,630 2 250,920 3 40-49 350,350 5 647,840 9 50-59 930,140 14 1,365,040 19 60-69 1,705,730 26 1,801,430 25 70-79 1,858,260 29 1,607,630 22 80+ 1,326,740 21 1,418,050 20 NOTE: Data are from the Data Modeling Branch, Division of Cancer Control and Popula- tion Sciences, National Cancer Institute. Percentages may not sum to 100 percent due to rounding. SOURCE: American Cancer Society. Cancer Treatment and Survivorship: Facts and Figures. Atlanta: American Cancer Society, Inc. ACS, 2012c. who have lower SES, are racial and ethnic minorities, and people who lack health insurance coverage (ACS, 2011; ACSCAN, 2009; AHRQ, 2011b, 2012b). The committee addresses the importance of ensuring that cancer care is accessible and affordable to all individuals in Chapter 8. SES is an important factor in cancer survival and cancer death (ACS, 2011; IOM, 1999). For example, the 5-year cancer survival rate is 10 per- centage points higher among people who live in affluent areas compared to people who live in poorer areas (Ward et al., 2004). People who have lower SES (measured by years of education) are more likely to die from cancer compared to people who have higher SES, regardless of other de- mographic factors; this disparity is likely to increase (ACS, 2011). There are several possible explanations for the correlation between low SES and poor cancer survival. Individuals with low SES often lack access to preventive care or cancer treatment due to the high cost of care, lack of health insurance, poor health literacy, or because they live in poor or rural areas that are geographically isolated from clinicians (ACS, 2011). As a re- sult, these individuals may be more likely to be diagnosed with late-stage cancers, which could have been treated more effectively if diagnosed earlier. In addition, an individual’s SES can influence the prevalence of

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52 DELIVERING HIGH-QUALITY CANCER CARE FIGURE 2-5  Estimated and projected number of cancer survivors in the United States from 1977 to 2022 by year since diagnosis. SOURCE: Reprinted from Cancer Epidemiology, Biomarkers & Prevention, 2013, 22(4), 561-570, de Moor, Cancer survivors in the United States: Prevalence across the survivorship trajectory and implications for care, with permission from AACR. Figure 2-5 R02518 behavioral risk factors for cancer, including tobacco use, poor diet, and physical inactivity, as well bitmapped uenditable as the likelihood of following cancer screening recommendations (ACS, 2011; NCI, 2008). People with less education, for example, are more likely to smoke and those with lower incomes are less likely to exercise than people with higher education and incomes (ACSCAN, 2009). Some racial and ethnic groups have poorer survival and higher cancer death rates compared to other groups (ACS, 2013b). From 1999 to 2008, overall cancer death rates appreciably declined in every racial and ethnic group except American Indian and Alaska Native populations (Eheman et al., 2012). African Americans have the highest death rate of all racial and ethnic groups; the death rate for all cancers combined is 31 percent higher in African American men compared to White men and 15 percent higher for African American women compared to White women (ACS, 2013a). African Americans also have a lower 5-year overall survival rate from cancer than Whites (60 percent versus 69 percent) (ACS, 2013a).

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THE CURRENT CANCER CARE LANDSCAPE 53 Asian Americans generally have lower cancer death rates than Whites; however, disparities in survival exist for certain types of cancers, such as stomach and liver cancer (NCI, 2012d; OMH, 2012). Death rates are lower among Hispanics than among non-Hispanic Whites for all cancers combined and for the four most common cancers (prostate, female breast, colorectal, and lung) (ACS, 2012a). Table 2-4 provides overall cancer death rates by race and ethnicity. As noted previously, the factors contributing to racial and ethnic disparities in cancer outcomes are complex and overlapping, and they can include low SES; unequal access to care; differences in behavioral, environmental, and genetic risk factors; and social and cultural biases that influence the quality of care (AACR, 2012; ACS, 2011). African Ameri- cans are often diagnosed at later stages of disease than are Whites, when the severity is greater and the odds of survival are poorer (ACS, 2013a; AHRQ, 2011b, 2012b). Although Hispanics have lower cancer death rates than Whites, they too are often diagnosed at later stages of disease than are Whites (ACS, 2012a). Patient beliefs and choices may contribute to the later stage of diagnosis (Espinosa de los Monteros and Gallo, 2011; Margolis et al., 2003; Stein et al., 2007). Racial and ethnic minorities may be more skeptical about the medical community due to past incidents of mistreatment (IOM, 1999, 2003). In addition, problems in communication and coordination of care may contribute to the disparities in treatment outcomes. According to one study, racial and ethnic minorities and non- English speakers were less likely to report that they had received excellent or very good cancer care than were Whites, and analyses found that a TABLE 2-4  Death Rates by Race in 2006-2010 from 18 SEER Geographic Areas Death Rates by Race and Ethnicity Race/Ethnicity Male Female All Races 215.3 per 100,000 men 149.7 per 100,000 women White 213.1 per 100,000 men 149.8 per 100,000 women African American 276.6 per 100,000 men 171.2 per 100,000 women Asian/Pacific Islander 132.4 per 100,000 men   92.1 per 100,000 women American Indian/ 191.0 per 100,000 men 139.0 per 100,000 women Alaska Native Hispanic 152.1 per 100,000 men 101.2 per 100,000 women NOTE: SEER = Surveillance, Epidemiology, and End Results program. SOURCE: NCI, 2013a.

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80 DELIVERING HIGH-QUALITY CANCER CARE Maione, P., F. Perrone, C. Gallo, L. Manzione, F. Piantedosi, S. Barbera, S. Cigolari, F. Rosetti, E. Piazza, S. F. Robbiati, O. Bertetto, S. Novello, M. R. Migliorino, A. Favaretto, M. Spatafora, F. Ferrau, L. Frontini, A. Bearz, L. Repetto, C. Gridelli, E. Barletta, M. L. Barzelloni, R. V. Iaffaioli, E. De Maio, M. Di Maio, G. De Feo, G. Sigoriello, P. Chiodini, A. Cioffi, V. Guardasole, V. Angelini, A. Rossi, D. Bilancia, D. Germano, A. Lamberti, V. Pontillo, L. Brancaccio, F. Renda, F. Romano, G. Esani, A. Gambaro, O. Vinante, G. Azzarello, M. Clerici, R. Bollina, P. Belloni, M. Sannicolo, L. Ciuffreda, G. Parello, M. Cabiddu, C. Sacco, A. Sibau, G. Porcile, F. Castiglione, O. Ostellino, S. Monfardini, M. Stefani, G. Scagliotti, G. Selvaggi, F. De Marinis, O. Martelli, G. Gasparini, A. Morabito, D. Gattuso, G. Colucci, D. Galetta, F. Giotta, V. Gebbia, N. Borsellino, A. Testa, E. Malaponte, M. A. Capuano, M. Angiolillo, F. Sollitto, U. Tirelli, S. Spazzapan, V. Adamo, G. Altavilla, A. Scimone, M. R. Hopps, F. Tartamella, G. P. Ianniello, V. Tinessa, G. Failla, R. Bordonaro, N. Gebbia, M. R. Valerio, M. D’Aprile, E. Veltri, M. Tonato, S. Darwish, S. Romito, F. Carrozza, S. Barni, A. Ardizzoia, G. M. Corradini, G. Pavia, M. Belli, G. Colantuoni, E. Galligioni, O. Caffo, R. Labianca, A. Quadri, E. Cortesi, G. D’Auria, S. Fava, A. Calcagno, G. Luporini, M. C. Locatelli, F. Di Costanzo, S. Gasperoni, L. Isa, P. Candido, F. Gaion, G. Palazzolo, G. Nettis, A. Annamaria, M. Rinaldi, M. Lopez, R. Felletti, G. B. Di Negro, N. Rossi, A. Calandriello, L. Maiorino, R. Mattioli, A. Celano, S. Schiavon, A. Illiano, C. A. Raucci, M. Caruso, P. Foa, G. Tonini, C. Curcio, and M. Cazzaniga. 2005. Pretreatment quality of life and functional status assessment signifi- cantly predict survival of elderly patients with advanced non-small-cell lung cancer receiving chemotherapy: A prognostic analysis of the multicenter Italian lung cancer in the elderly study. Journal of Clinical Oncology 23(28):6865-6872. Mandelblatt, J. S., L. A. Faul, G. Luta, S. B. Makgoeng, C. Isaacs, K. Taylor, V. B. Sheppard, M. Tallarico, W. T. Barry, and H. J. Cohen. 2012. Patient and physician decision styles and breast cancer chemotherapy use in older women: Cancer and Leukemia Group B Protocol 369901. Journal of Clinical Oncology 30(21):2609-2614. Margolis, M., J. Christie, G. Silvestri, L. Kaiser, S. Santiago, and J. Hansen-Flaschen. 2003. Racial differences pertaining to a belief about lung cancer surgery: Results of a multi- center survey. Archives of Internal Medicine 139(7):558-563. Mariotto, A. B., K. R. Yabroff, Y. Shao, E. J. Feuer, and M. L. Brown. 2011. Projections of the cost of cancer care in the United States: 2010-2020. Journal of the National Cancer Institute 103(2):117-128. Mather, M. 2012. What’s driving the decline in U.S. population growth? http://www.prb.org/ Articles/2012/us-population-growth-decline.aspx (accessed August 7, 2012). Meropol, N. J., and K. A. Schulman. 2007. Cost of cancer care: Issues and implications. Jour- nal of Clinical Oncology 25(2):180-186. Milstein, A. 2012. Code red and blue: Safely limiting health care’s GDP footprint. New Eng- land Journal of Medicine. Mor, V., V. Wilcox, W. Rakowski, and J. Hiris. 1994. Functional transitions among the el- derly: Patterns, predictors, and related hospital use. American Journal of Public Health 84(8):1274-1280. Muss, H. B., D. A. Berry, C. Cirrincione, D. R. Budman, I. C. Henderson, M. L. Citron, L. Norton, E. P. Winer, C. A. Hudis, and Cancer and Leukemia Group B Experience. 2007. Toxicity of older and younger patients treated with adjuvant chemotherapy for node- positive breast cancer: The Cancer and Leukemia Group B experience. Journal of Clinical Oncology 25(24):3699-3704. NCI (National Cancer Institute). 2007. Cancer trends progress report—2007 update: Costs of cancer care. http://progressreport.cancer.gov/2007/doc_detail.asp?pid=1&did=2007& chid=75&coid=726&mid= (accessed May 13, 2013).

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THE CURRENT CANCER CARE LANDSCAPE 85 Annex 2-1 Relevant Provisions of the Affordable Care Act Provision Description Access to Care and Health Disparities Coverage for Participation in • New rule for insurers (exempts grandfathered plans) Clinical Trials • Prohibits insurers from dropping or limiting coverage for individuals participating in clinical trials    o Applicable to clinical trials that treat cancer or other life-threatening conditions    o Provides routine care costs for approved clinical trials only Essential Health Benefits • Health insurance mandate (EHB) Package • Requires all health plans sold to individuals and small businesses to cover a minimum set of services, including chronic disease management • Each state selects one plan to serve as the benchmark plan in their state Health Professional • Human service grant program Opportunity Grants • Provides comprehensive health care training and employment-related public services (e.g., transportation) to low-income workers Health Resources and • Established a fund to expand the existing program Services Administration • Provides access to primary health care for vulnerable (HRSA) Community Health populations Center Program Medicaid Expansion • States can choose to extend Medicaid eligibility to all U.S. citizens under the age of 65 with incomes less than 133 percent of federal poverty level • Provides EHB to newly eligible individuals through “benchmark” coverage plans • Requires participating hospitals to make presumptive eligibility determinations for Medicaid patients National Health Service • Expansion of existing program Corps • Funds and places health professionals in areas with workforce shortages Prescription Drug Discounts • Relief to seniors in the Centers for Medicare & Medicaid Services (CMS) prescription drug benefit coverage gap (i.e., the “donut hole”)    o Provides a 50 percent discount on covered brand- name prescription drugs    o The discount reduces by a certain percentage each year, until the gap closes in 2020 continued

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86 DELIVERING HIGH-QUALITY CANCER CARE Provision Description State Option to Provide • Optional amendment to state Medicaid programs Health Homes for Enrollees • Allows beneficiaries with chronic conditions to be with Chronic Conditions enrolled into a health home Tobacco Cessation Services • Requires Medicaid to cover, without cost sharing, for Pregnant Women with counseling and pharmacotherapy services for tobacco Medicaid cessation for pregnant women Understanding Health • Data collecting and reporting requirement Disparities • All federally funded health care or public health programs, activities, or surveys must collect and report standardized data on race, ethnicity, sex, primary language, and disability status • National Coordinator for Health Information Technology to develop national standards for management of the data collected Coordination and Organization of Care Community Health Teams to • Grant program Support the Patient-Centered • Supports states in establishing community health Medical Home (PCMH) teams that can staff PCMH Medication Management • Grant program Services in Treatment of • Aids clinicians in delivering medication management Chronic Disease services for the treatment of chronic diseases National Center for Health • New section of HRSA Workforce Analysis • Collects health workforce data and intelligence National Health Care • Commission of 15 members appointed by the Workforce Commission Comptroller General • Coordinates federal efforts to monitor and address challenges faced by the nation’s health care workforce Patient Navigator System • Reauthorization of a patient navigator program • Connects patients with health care service coordinators to diagnose, treat, and manage chronic disease(s) Program to Facilitate Shared • Program to develop, test, and disseminate Decision Making educational tools to aid in health decision making • Agency for Healthcare Research and Quality (AHRQ) to issue contract with an entity to develop patient decision aids • U.S. Department of Health and Human Services (HHS) to disperse grants for the establishment and support of Shared Decision Making Resource Centers

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THE CURRENT CANCER CARE LANDSCAPE 87 Provision Description Prevention Clinical and Community • Creates the Community Preventive Services Task Preventive Services Force; an independent, nonfederal panel of public health and prevention experts • Provides Congress with a yearly report of findings and recommendations on community preventive services, programs, and policies Community Transformation • Grant program funded through the Prevention and Grant Program Public Health Fund • Supports community-driven interventions focused on reducing chronic conditions, preventing the development of secondary conditions, addressing health care disparities, and developing stronger evidence for community-level prevention programming Coverage of Preventive • New rule for insurers Health Services • Requires insurers to provide a minimum level of preventive health services without cost sharing    o Services include those rated “A” or “B” by the U.S. Preventive Services Task Force (USPSTF), screening and mammography recommended by the USPSTF, immunizations recommended by the Advisory Committee on Immunization Practices, and preventive care and screenings for youth and women recommended by HRSA Education and Outreach • National public-private partnership campaign Campaign Regarding • Funded through the Prevention and Public Health Preventive Benefits Fund • Raises awareness of the importance of prevention • Educates public and health care clinicians about preventive health services recommended by the USPSTF and covered by exchange programs National Prevention Strategy • Product of the National Prevention, Health Promotion and Public Health Council • Comprehensive plan to improve the health of the nation through preventive efforts Prevention and Public Health • Fund within HHS Fund • Makes investments in prevention and public health programs continued

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88 DELIVERING HIGH-QUALITY CANCER CARE Provision Description Reimbursement and Incentives Advanced Payment ACO • Incentive program in the CMS Innovation Center Model • Encourages participation in the Shared Savings Program    o Provides ACOs with a pre-payment of a portion of their future shared savings    o This money is to be invested in infrastructure and staff for care coordination Community Care Transitions • Five-year program in the CMS Innovation Center Program • Tests models for improving care transitions from the hospital to other settings and avoiding unnecessary hospital readmissions CMS Innovation Center • A new center in CMS • Tests innovative payment and service delivery models intended to reduce program expenditures, while preserving or enhancing the quality of care • HHS Secretary has the authority to scale successful delivery models up to the national level Hospital Readmissions • CMS program Reduction Program • Reduces Medicare payment to hospitals with high readmissions for specific conditions • Excludes hospitals providing primarily rehabilitative, psychiatric, or long-term care; children’s hospitals; critical access hospitals; and certain cancer and research centers Hospital Value-Based • Incentive program in CMS Purchasing (VBP) Program • Hospitals are reimbursed for inpatient acute care services based on the quality of the care they provide, not the quantity of services • Hospitals publicly report performance on a set of quality measures Independent Payment • Independent 15-member panel of appointed experts Advisory Board • Recommends cost-saving measures for Medicare should it exceed an established targeted growth rate Medicare Advantage • Reward program in CMS Quality Bonus Payment • Bonuses paid to Medicare Advantage plans that meet Demonstration certain standards Medicare’s Shared Savings • Incentive program in the CMS Innovation Center Program • Encourages the formation of accountable care organizations (ACOs) by allowing these organizations to    o Receive traditional Medicare fee-for-service payments    o Be eligible for additional payments if they meet predetermined quality and savings targets

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THE CURRENT CANCER CARE LANDSCAPE 89 Provision Description Pioneer ACO Model • Incentive program in the CMS Innovation Center • Encourages health care clinicians already experienced with providing coordinated care to become ACOs • Uses a shared savings payment model with higher levels of shared savings and risk Quality Metrics Medicare Prospective • CMS cancer-focused quality reporting program Payment System Exempt • Applies to 11 cancer centers whose federal Cancer Hospitals reimbursement is not based on traditional payment system and are exempt from existing federal reporting programs (e.g., CMS core measures) • Mandates reporting of process, structure, outcomes, efficiency, costs of care, and patients’ perspective on care measures • Measure rates will be posted on a federal website (i.e., Hospital Compare) Medicare Qualified Entities • CMS program Data Release Program • Makes Medicare claims data available to qualifed entities to measure health care provider and supplier performance National Quality Strategy • National quality improvement strategy • HHS Secretary will annually update the strategy and identify priorities to improve the delivery of health care services, patient outcomes, and population health Public Reporting of Provider • HHS strategic framework for publicly reporting Performance Information provider performance information • Performance information available on a website, tailored to different viewers’ perspectives Quality Measure • Component of National Quality Strategy Development • Requires HHS Secretary to select an entity to convene stakeholders and provide input on the selection of quality measures • Provides grants to entities for further improving, updating, or expanding quality measures • HHS Secretary to develop and periodically update outcome measures for hospital providers and physicians, including at least    o 10 measurements for acute and chronic diseases; and    o 10 measurements for primary and preventive care

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90 DELIVERING HIGH-QUALITY CANCER CARE Provision Description Rapid Learning Health Care/Information Technology/Infrastructure for Research Patient-Centered Outcomes • Nonprofit corporation Research Institute (PCORI) • Assists patients, clinicians, policy makers, and purchasers in making informed health decisions by assessing    o National clinical research priorities    o New clinical evidence and gaps in evidence    o Relevance of clinical evidence and economic impact