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Institute of Medicine (US) Committee on Cancer Research Among Minorities and the Medically Underserved; Haynes MA, Smedley BD, editors. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington (DC): National Academies Press (US); 1999.

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The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved.

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1The Struggle Against Cancer

At the beginning of the 20th century, cancer was eight among the leading causes of death. Infectious diseases were prominent, with pneumonia, influenza, tuberculosis, and gastrointestinal diseases being responsible for one-third of all deaths. Life expectancy at birth was 49 years. As the century progressed, however, people survived to older ages and chronic noninfectious diseases became much more common, such that by the middle of the century, the leading causes of death were heart disease, cancer, and stroke. At the beginning of the century, cases of lung cancer was so rare that it was shown to medical students as a condition that the students were unlikely to see again during their medical practices. By the 1940s, however, lung cancer was becoming quite common (Weinberg, 1996). As a result of these changes in the causes of mortality, important changes in national health policy began to take place.

In 1937 the National Cancer Institute Act established the National Cancer Institute (NCI) within the U.S. Public Health Service (P.L. 75-244). The Act directed the Surgeon General to promote the coordination of research conducted by the Institute and similar research conducted by other agencies, organizations, and individuals. To reduce the rate of mortality from the major causes of death, however, it was necessary to do more than conduct research. The federal government initiated a concerted effort to increase the training of qualified practitioners capable of managing these diseases, as well as to make knowledge regarding cancer prevention and treatment generally available to the public. The U.S. Congress was considering a planned attack against these problems and favored a decentralized approach involving the largely private nonprofit medical centers and community hospitals. The heart disease, cancer, and stroke amendments to the Public Health Service Act of 1965, for example, provided grants-in-aid for the support of regional medical programs (RMPs) for research and training, as well as for the diagnosis and treatment of these major diseases. The RMPs were centered at medical schools and their affiliated hospitals. The intent was to encourage a linkage between the medical centers and the community hospitals, thereby improving the quality of care for these conditions (Bodenhimer, 1969). The President's Commission on Heart Disease, Cancer, and Stroke had also recommended the development of a network of regional comprehensive cancer centers (President's Commission on Heart Disease, Cancer, and Stroke, 1964). These centers were to focus on cancer control programs and conduct studies at the various regional centers. The centers were to be at the forefront of the struggle against cancer, but these recommendations were not realized until later, and in 1974 the RMPs were absorbed into the National Health Planning and Resources Development Act (see Box 1-1 for a timeline of significant events in the War on Cancer, and Box 1-2 for a listing of recent developments in NCI efforts regarding ethnic minority and medically underserved populations).

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BOX 1-1

Highlights of National Cancer Program Events Relevant to Ethnic Minority and Medically Underserved Populations (years are calendar years).

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BOX 1-2

Chronology of Recent Events Relevant to Cancer Research Among Ethnic Minority and Medically Underserved Populations. January 1996 National Conference on the Recruitment and Retention of Minority Participants in Clinical (more...)

The Focus on Cancer

The greatest impetus to the effort against cancer came with the enactment of the National Cancer Act of 1971 (P.L. 92-218). The National Panel of Consultants on the Conquest of Cancer (the Yarborough Commission) had emphasized the need for a coherent and systematic attack on the complex problems of cancer and urged the development of a comprehensive national plan to conquer cancer as soon as possible. This was to be the beginning of the real War on Cancer. The National Cancer Act of 1971 increased funding for NCI and made major changes to previous efforts against cancer. It provided for greater authority of the NCI director, who became a presidential appointee and who could submit a budget request directly to the president. It established the President's Cancer Panel and the National Cancer Advisory Board. The Act also called for a National Cancer Program under the leadership of the NCI director, who was to coordinate not only the cancer research programs within the Institute but also the efforts of related federal and nonfederal programs. It also authorized the first cancer centers and an information dissemination program.

Beginning of the War on Cancer

The War on Cancer was launched with great expectations and with increased funding just before Christmas of 1971. Some enthusiastically expected that it would come to a swift and successful end. To complicate matters, however, the war had a series of commanders, each adding his or her own perspective to the overall strategy and how it should be implemented. Despite warnings to the contrary, it appeared reasonable for some to assume that if there were enough money and sufficient commitment, scientists could quickly solve this problem, at least by the 200th anniversary of the founding of the nation in 1976. After all, scientists had developed the atomic bomb and had successfully landed a man on the moon. There was no quick result, however, in the War on Cancer.

What did happen in 1976 was a revolution in thinking about cancer genes. That revolution was triggered by a publication in the journal Nature by Stehelin, Varmus, Bishop, and colleagues (Stehelin et al., 1976). It was the beginning of the concept that a gene from a normal cell could be converted to a cancer-causing gene. The significance of this fundamental finding was not fully appreciated until later. Rather, the expectation of quick results continued, and might have been strengthened when NCI announced the goal of reducing the incidence of cancer by 50 percent by the year 2000.

Mechanisms of Development of Cancer

Although the Panel of Consultants had placed great emphasis on a national plan, such planning was contrary to the tradition of the National Institutes of Health (NIH), which had always acted on the basis that the greatest progress occurs when independent investigators are allowed to pursue their interests. Many argued that research could not be planned at all, and in the case of cancer, about which so little was known, directed research would have been inappropriate. It would be better for the Institute to focus on understanding the underlying mechanisms of the development of cancer. To make matters worse, some of the demonstration programs were premature and did not yield the expected results. They did, however, demonstrate that the Institute did not know how to effect change among either practicing physicians or the lay public. As a result, NCI placed most of its emphasis on doing and supporting what it does best: basic research.

There was a period when the overwhelming evidence for the relationship between tobacco and lung cancer was known but the mechanism of the development of cancer was not understood. Until then there was a struggle between those who believed that cancer was caused by environmental exposures to carcinogens and those who believed that the cause was a viral infection. To add to the confusion, the tobacco industry and its supporters did not accept the ''environmental exposure" concept. Later legislation called for expansion of research for the prevention of cancer caused by occupational or environmental exposures to carcinogens. The focus on viral infections in cancer research did a great deal to promote virology, but the mechanisms by which viruses caused cancer remained unclear. As a result, the War on Cancer was a strange war, one in which it was not quite clear who the enemy was, nor was there an effective method of defeat.

Soldiers in the War on Cancer

The cancer centers played a major role in the War on Cancer. They were the focal point for clinical and nonclinical research, and from these centers the latest and best methods for the treatment, prevention, and control of cancer were discussed with professionals and the lay public. These centers grew in number, and the level of funding that they received grew as well, but the efforts were not coordinated into a national plan. The greatest emphasis was on trying to understand the underlying mechanisms of cancer development.

The National Cancer Act also mandated the collection, analysis, and dissemination of information that would be useful in the prevention, diagnosis and treatment of cancer. This resulted in the development of the Surveillance, Epidemiology, and End Results (SEER) program in 1973. The rationale for the establishment of the SEER program was that data collection could be useful in the effort to understand the cancer problem, especially when the rates of cancer are significantly different in various groups of the population. In fact, the data pointed to wide disparity in the rate of mortality from cancer among the African-American population, compared with that among the white population. Race or poverty was often stated as an explanation for this disparity, but a completely satisfactory answer was not available. The data pointed to a need for special attention to cancer in the African-American population and may have been a major factor in approving the development of the Drew-Meharry-Morehouse Consortium Cancer Center in 1988. Other initiatives also focused on what the Institute called "special populations." These included the Black Leadership Initiative on Cancer, the Hispanic Leadership Initiative, and the Appalachian Leadership Initiative. The last initiative was formed in recognition of the fact that rural, poor whites experienced the same burden of cancer as ethnic minority groups. A Leadership Initiative for American Indian and Alaska Native populations or other groups was never formed. These efforts were stimulated by the groups involved and were supported by the Institute, but they were not the result of an Institute strategy to reduce the burden of disease in these populations.

Legislation established the position of Associate Director for Prevention in NCI and added to the mission of the Institute research on the continuing care of patients with cancer and their families. In 1993, the NIH Revitalization Act (P.L. 103–43) required that the Institute intensify and expand its research on breast and women's cancers and prostate cancer. It also required a set-aside for cancer control activities.

Progress Reports

The U.S. Congress had given NCI special consideration since the beginning of the War on Cancer, as evidenced by increased levels of funding and authority. In 1993, however, the nation, through its elected representatives in the House and the Senate, appeared to be unhappy with the progress of the War, although it was impressed by the breakthroughs in molecular biology.

Progress Report 1

In 1993 the Institute prepared a report on the progress that had taken place between 1982 and 1992 in the scientific understanding of cancer (National Cancer Institute, 1993). Six expert panels provided evidence of substantial progress in a variety of areas. Perhaps the most fundamental progress, according to this report, was in understanding of the multistep process of genetic changes by which cancer is initiated and promoted. Cancer had come to be recognized as a genetic disease or a category of diseases caused by the accumulation of mutations. Most of the mutations are somatic and occur only in an individual's cancer cells, but about 1 percent of all cancers are associated with a hereditary syndrome, and individuals with these hereditary syndromes carry the mutation in every cell of their body (Fearon, 1997). Advances in biotechnology had enabled scientists to identify normal genes that stimulate cell proliferation. These genes undergo mutation as a result of exposure to carcinogens, and the disruption in their function results in abnormal cell growth. In addition to these genes, which are called oncogenes, suppressor genes suppress the growth of tumors. Mutation or damage to these genes also causes abnormal growth.

Much of the new knowledge about the prevention, diagnosis, and treatment of cancer had resulted from the study of cells at the genetic level and had become possible through the use of new technologies such as the polymerase chain reaction. New technologies included nuclear magnetic resonance imaging and computer modeling. In addition, the ability to identify genetic markers had contributed to the ability to detect inherited susceptibility to cancer, and some marker genes such as the BRCA1 gene had been identified.

Progress in the detection of cancer had been affected by new or improved imaging technologies such as mammography for the detection of breast cancer. Instead of using open surgical techniques, it had become possible to use image-guided procedures that would allow biopsy needles to precisely collect minute tumor samples. In general, it became possible to use less invasive procedures to obtain more reliable results.

In the area of treatment, the greatest improvements were achieved against the cancers that occur during childhood. Improvements in bone marrow transplantation techniques had also taken place. The quality of life for cancer survivors had improved through advances in treatment involving better conservation of function. Improvements in the use of counseling, support groups, and behavioral techniques had also taken place.

In the area of prevention, progress had occurred on a number of fronts. For example, there had been progress in understanding the relationship between environmental secondhand smoke and lung cancer. As a result, increasing prohibitions against smoking in public places and the work site had taken place. The observed reduction in smoking rates (from 50 percent in 1950 to 26 percent in 1993) was expected to have a significant impact on rates of death, not only deaths due to lung cancer but also those due to cancers of the mouth, pharynx, esophagus, and bladder. The reduction in the smoking rate would also reduce the numbers of deaths from heart disease. However, the NCI warned that the rate of progress in reducing the numbers of deaths would be slow.

Progress in prevention occurred in other areas as well. Research had strengthened the evidence of a connection between diet, nutrition, and cancer, but the preventive effects of dietary change were expected to be measurable only over a period of many years. In addition, the Women's Health Initiative Hormone Trial investigated the impact of combined estrogen and progesterone therapy and its association with breast cancer. Further, on the cutting edge of prevention research were early attempts to use biomarkers and intermediate endpoints as a means of identifying individuals who were likely to develop cancer and for whom justifiable interventions exist. The use of such markers would shorten the time and the number of patients needed to complete an intervention trial.

With respect to environmental carcinogens, new knowledge concerning the synergistic effects of multiple environmental exposures such as cigarette smoke and asbestos had been gained, and many of the known workplace carcinogens had been removed from common use. However, the scientific evidence that could be used to connect particular environmental risks to specific diseases had not yet been well developed.

Whereas cancer prevention research sought to establish the efficacies of preventive interventions, cancer control sought to develop effective strategies that could be used to translate them into practice. The Institute's progress report included specific advances in several areas, including the following:

  • control of tobacco use;
  • development of information dissemination programs about screening for the detection of breast and cervical cancers;
  • development of strategies to reach special populations at high risk; increased public interest and activism in reducing cancer risk and participating in screening and early-detection programs;
  • improving the quality for life of cancer survivors;
  • recognition of the importance of population-based health care providers in the dissemination of state-of-the-art cancer prevention and treatment; and
  • educational efforts to inform individuals about reducing their risk of cancer through dietary modification.

This was an impressive record of accomplishments, and it was accompanied by statistics that showed that there had been progress against some cancers, little change in progress against other cancers, and significantly increasing public health problems posed by still other cancers.

Progress Report 2

A different assessment of the War on Cancer was best expressed by John Bailar, the first director of cancer prevention research at NCI, although it was also held by others. His view was that the War on Cancer had been a failure. This was not a new conclusion for Bailar and colleagues (Bailar and Gornik, 1997; Bailar and Smith, 1986), and the overall mortality statistics supplied by the Institute were consistent with his conclusion. Despite the War on Cancer, the numbers of deaths from cancer had increased, and different interpretations had been made to explain the increase. The largest contribution to the increase was due to lung cancer. Those rates were beginning to fall for men but were still rising for women. When one excluded lung cancer from the statistics, the conclusions allowed one to be optimistic, but the reason for excluding lung cancer was recognition of the fact that deaths from lung cancer would decrease only over a period of many years, even if the rate of smoking were sharply reduced. The greatest impact would come from an emphasis on smoking prevention rather than smoking cessation. Bailar and colleagues concluded that the Institute needed to change its strategy if it wanted to win the War. It needed to emphasize prevention.

Progress Report 3

The view of Bailar and colleagues was not as negative as that held by a small segment of the public, especially those who are more favorably disposed to the use of "natural" remedies. Their view is that there is a conspiracy among researchers and the pharmaceutical industry to suppress a cure for cancer because it is a lucrative business. Cancer treatments are expensive for patients but rewarding for those who devote their careers or their investments to cancer treatment. In their view, there is no incentive to find a real cure. This is not a scientific perspective, but the perception should not be ignored.

Finally, Some Good News

In 1998 there was finally some good news about the rate of mortality from cancer, the kind of news that suggested that the War on Cancer is being won. The American Cancer Society, along with NCI, the Centers for Disease Control and Prevention, and the National Center for Health Statistics (NCHS), released a report card to the nation (Wingo et al., 1998) indicating that for the period from 1990 to 1995 death rates from cancer for all sites of cancer combined decreased 0.5 percent per year, after increasing 0.4 percent per year between 1973 and 1990. This was a significant change in direction. The declines per year for all sites of cancer combined were significant among African Americans (-0.8 percent), whites (-0.4 percent), and Hispanics (-0.6 percent). For Asians and Pacific Islanders the death rates from cancer for all sites combined were not changed because the rate increased for females and decreased for males. Cancer remains the leading cause of death among women of Asian and Pacific Islander decent; this is not the case among any other ethnic or gender group. Among males, the rate of mortality from prostate cancer increased 1.6 percent per year during the same period. Among white and African-American females, rates of lung cancer increased 1.7 and 1.0 percent per year, respectively (Wingo et al., 1998).

These data would be even more impressive if the reasons for the declines were understood. In the case of lung cancer the decrease is clearly related to the smoking rate reductions that have taken place over the past 30 years, suggesting the effectiveness of previous cancer control programs. The reasons for the decrease in the rate of mortality from prostate cancer remain unclear. The decline in the rate of mortality from breast cancer among white females is most likely due to the increased use of mammography, but there was no decrease in the rate of mortality from breast cancer among black females, despite the increased use of mammography by that group. The decline in colorectal cancer among all ethnic groups is also not satisfactorily explained.

The report was immediately challenged by the Intercultural Cancer Council (ICC) on the grounds that the database from which the statistics were drawn had major blind spots that leave nearly half of the U.S. population, especially minority and poor individuals, undercounted (Intercultural Cancer Council, 1998). ICC urged that the director of NCI follow his commitment to place a high priority on achieving better statistics on the rate of cancer among these populations.

The director of NCI, Richard Klausner, presented a more optimistic note to Congress. He pointed out that the problem of cancer among ethnic minority populations is not monolithic but varies by ethnic group, gender, and disease site, with some ethnic groups having lower rates of some cancers than the overall population. When questioned by Representative Louis Stokes about the disparity in the rate of mortality from cancer among African Americans, Klausner noted that there had been a decline in mortality among African Americans. When questioned about the Institute's ability to make good use of increased funds, Klausner stated, "We know cancer is a complicated puzzle, but I actually believe we know what we need to do to push us much farther to knowing what the puzzle looks like. I don't know how long it will take to finish, and I don't know what we will find, but we really do know what to do" (The Cancer Letter, 1998, p. 4).

The Healthy People 2000 Review

Another way of assessing progress is on the basis of the Healthy People 2000 cancer objectives. NCI organized the progress review for a meeting chaired by the Surgeon General on April 17, 1998. That review focused on the 17 objectives in the Healthy People 2000 cancer priority area (U.S. Public Health Service, 1991). In 1995, the year 2000 target for overall death rates from all forms of cancer was achieved with the finding of a rate of 130 cases reported per 100,000 population. In 1995, the death rate among African Americans had exceeded the year 2000 target of 175 by reaching 172 per 100,000 population. Deaths from cervical cancer, however, were continuing to rise among African-American and Hispanic women to levels of 5.2 and 3.1 per 100,000 population, respectively, whereas the death rate from cervical cancer for all females was 2.5 per 100,000 population in 1995. This increase was disturbing, given that with the present state of knowledge, death from this form of cancer is practically preventable. The decrease in deaths from colorectal cancer exceeded the year 2000 target. Smoking rates among African Americans, Hispanics, and American Indians and Alaska Natives ages 18 years and older decreased to 26, 18, and 25 percent, respectively, but the smoking rate among African-American adolescents had begun to rise. Among Vietnamese males the smoking rate had decreased sharply from the 1984 to 1988 baseline of 55 percent to 35 percent in 1990. The average daily intake of vegetables, fruits, and grain products was moving toward the year 2000 target, with the daily intake of grain products exceeding the target of 6.0 servings. The proportion of primary care providers who routinely counsel patients about tobacco use cessation had exceeded the year 2000 target of 75 percent. In 1994, 56 percent of all females ages 50 years and older had received a clinical breast examination and mammogram. For African-American females the rate was 56 percent, whereas for Hispanics and low-income females the rates were 50 and 38 percent, respectively. The year 2000 target is 60 percent for all groups. In 1994, 94 percent of females reported having received a Pap smear. The proportion of Hispanic females ages 18 years and over who had ever received a Pap smear had increased from 75 percent in 1987 to 91 percent in 1994. The year 2000 target is 95 percent. Death rates from oral cancer were decreasing, but the rate among African Americans was still about twice as high as that among the general population.

More Good News

There was more good news in 1998, especially relating to the prevention and treatment of breast cancer. In April of 1998, NCI announced results of the Breast Cancer Prevention Trial, which demonstrated that tamoxifen was effective in preventing breast cancer (National Cancer Institute, 1998a). The data showed a 45 percent reduction in breast cancer incidence among the high-risk participants who took tamoxifen. In addition, herceptin was shown to be effective in targeting the abnormal gene HER-2/neu. This gene occurs in 30 percent of patients with breast cancer. As in other cases, these announcements reflect the fact that there is a substantial investment in research over many years before success is finally achieved.

The Fundamental Questions

The fundamental questions being asked by members of the public and their elected representatives can be expressed in simple terms: Is there a strategic plan for reducing the numbers of deaths from cancer, and when can measurable results be expected? Progress Report 1 did not provide satisfactory answers to these questions because the strategic plan, if it existed, appeared to place a high priority on understanding the mechanisms of the development and spread of cancer, and there was no evidence that there was an overall reduction in the number of deaths from cancer.

Progress Report 2, an assessment performed independently of NCI, stated that the wrong strategy was pursued and suggested that a prevention strategy would yield the desired results. These are only partial answers to the questions. Knowing and removing the cause of disease can often achieve substantial results without providing an understanding of the underlying mechanisms, but even then, change does not always occur quickly. Lung cancer is highly preventable and the relationship between tobacco use and cancer has been known since 1950, but the rates of mortality from lung cancer have only recently begun to decline and the rate among women is still rising. Furthermore, cancer is not a single disease affecting one organ, but rather, it is a complex of diseases related to a variety of factors. Prevention efforts are long term and require a broad spectrum of disciplines, and individuals trained to work in these disciplines are in short supply.

Progress Report 3 is partially the result of a failure to provide an adequate answer to the fundamental question.

The 1998 report card (Wingo et al., 1998), based on data from the NCI SEER program and NCHS, provides more evidence that progress is actually occurring, but notes that not all populations have benefited equally from advances against cancer. It also suggested that progress will be slow. The Healthy People 2000 report (U.S. Public Health Service, 1991) indicates that progress has exceeded expectations in some areas but has been disappointing in others. Good news about prevention (tamoxifen) and treatment (herceptin) might emphasize the need to continue vigorous efforts on both fronts.

Following publication of the reports of the panels on Measuring the Progress Against Cancer (Extramural Committee to Assess Measures of Progress Against Cancer, 1990), a special National Cancer Advisory Board Committee concluded that much of the cause of the failure to achieve the desired results was beyond the domain of NCI. It clearly defined three research categories: basic research (the foundation and engine), translational research (the bridge between basic research and application), and applications research (in which the participants were neither researchers nor the funding agencies). The NCI-designated cancer centers were to be the primary bodies conducting the research, along with the community clinical oncology programs and the clinical trials cooperative groups. The centers and related programs were to participate in public information programs, community outreach activities, and training programs for community-based physicians. The committee offers a more thorough discussion of the cancer centers in Chapter 3.

The current director is reorganizing NCI, giving special attention to the Division of Cancer Control and Population Science, and is reportedly interested in improving the quality of care provided to poor, ethnic minority, and elderly populations with cancer.

The fundamental questions mentioned above will continue to be asked in a variety of ways. From the perspective of this committee, however, the question can be framed as follows: Is there a strategic plan for reducing the numbers of deaths from cancer among poor and minority individuals, and when can results be expected?

Copyright © 1999, National Academy of Sciences.
Bookshelf ID: NBK1793


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