ALFRED HAYNES, M.D.
Former President and Dean, Drew Postgraduate Medical School, and Former Director, Drew-Meharry-Morehouse Consortium Cancer Center, Los Angeles
Chair, Committee on Cancer Research Among Minorities and the Medically Underserved, Institute of Medicine
Labor, Health and Human Services, and Education Subcommittee
Senate Committee on Appropriations
January 21, 1999
Good morning Senator Specter and members of the Subcommittee. On behalf of the entire committee I am pleased to be here today to present our report.
One in four deaths in this country is attributable to cancer, which is expected to become the country's leading killer in the next century. Recent scientific gains have fueled the first overall reduction in deaths from cancer, but not all groups in the U.S. population have seen an improvement. Poor people and some ethnic minorities are more prone to certain types of cancer, and less likely to survive it, than are the rest of the population.
African-American men, for example, are more likely to be diagnosed with prostate cancer than white men. Asian Americans are more likely develop stomach and liver cancer. Cervical cancer is higher among Hispanic- and Vietnamese-American women. African American women, though less likely than others to develop breast cancer, are also less likely to survive it. Further, lower-income whites in rural areas such as Appalachia have some of the highest rates of specific types of cancer in the country. And Native Americans have the lowest cancer survival rates of all.
A key question for researchers and public health officials is why these differences in cancer and survival rates persist.
The 15-member Institute of Medicine committee that I chaired examined these questions, and looked at how the National Institutes of Health (NIH) approaches cancer research among minorities and the medically underserved. We examined how NIH prioritizes minority cancer research and how it applies research findings to prevention and treatment programs. We also looked at the adequacy of procedures related to including minorities in clinical trials, the communication of research results, and other key issues. Today we offer recommendations that we hope not only will help improve the health of minorities and the medically underserved, but everyone in our increasingly diverse society.
A critical first step is being able to pinpoint exactly what differences exist among ethnic groups and others. By legislation, the National Cancer Institute's Surveillance, Epidemiology, and End Results program -- or SEER -- is assigned the responsibility of assessing the burden of cancer in the population by continuously monitoring cancer incidence, mortality, and survival rates. It is the closest thing the country has to a longitudinal national cancer database, but limitations in the way data are collected have limited its usefulness.
Unfortunately, several key groups, such as many non-Mexican Hispanics, are not adequately covered in the SEER program. In order for this program to be most effective, it should be expanded to include these and other members of the population not now covered. These populations also include lower-income or poverty level whites, especially those living in rural areas. Further, this database should be coordinated with newer state databases to create a national registry with uniform methods of data collection and analysis.
In accordance with the guidelines of the federal Office of Management and Budget, the National Cancer Institute (NCI) classifies the population into one of four racial categories - White, Black, Asian or Pacific Islander, or Native American. This method of classification was not intended for epidemiological research and, in fact, is not consistent with current scientific thinking. There are no known biological boundaries that justify the division into races.
We recommend that NCI place a greater emphasis on the differences in cancer among ethnic groups, with a view to determining the roles that diet, lifestyle, and customs play in varying rates of cancer. We need to take advantage of the ethnic diversity of the American population to
explore, for example, why Chinese American men have such low rates of prostate cancer compared with African American men.
Overall, we believe that NIH needs to formulate a blueprint or a coordinated plan for addressing questions related to cancer among minorities and the medically underserved. NIH's Office of Research on Minority Health coordinates studies on ethnic minority health problems, but its impact is limited by the size of its budget and other constraints. That office should more actively coordinate, plan, and facilitate cancer research across NIH centers and institutes. Within the National Cancer Institute, the Office of Special Populations Research lacks the authority and resources to coordinate an extensive program of research on cancer among ethnic minorities. This office should be given greater authority to expand NCI's research in these areas.
NCI also should improve its estimates of the money it spends on the health needs of minorities and the medically underserved. NCI reported spending about $124 million in fiscal year 1997 for research and training programs addressing cancer in these populations, but we believe the true figure is closer to $24 million -- or about 1 percent of NCI's budget. NCI's estimate is derived by calculating the percentage of minorities enrolled in research studies. Our estimate is based on the number of funded projects that are focused specifically on minority health issues. We believe that NCI should base its estimate on the research question involved rather than on the percentage of minorities in its studies. When one considers the greater burden of cancer among minorities and the increasing diversity of the U.S. population, NCI's current allocation is too low.
In setting research priorities, NCI places strong emphasis on research that capitalizes on scientific opportunities, and rightly so. However, we believe that NCI should give consideration to the magnitude of the cancer problem in different ethnic groups. The diversity of the American population offers a great opportunity for exploring all of the possible causes of cancer.
Participation in clinical trials among minorities has improved in recent years, to the point where their participation in NCI sponsored cancer treatment trials is proportionate to the burden of disease in these populations. However, participation in prevention trials remains low. The absence of minorities in some of these trials -- for example the recently concluded tests of tamoxifen to prevent breast cancer in women at high risk for the disease -- raises questions about how applicable the results are to minority populations.
As NIH and NCI continue to review strategies for communicating with the public, they should give special attention to the needs of ethnically diverse and medically underserved communities. Among the key issues that remain is how to obtain truly informed consent from research subjects who experience language and literacy barriers.
NIH should establish a formal system of reporting to Congress and the public on cancer studies for ethnic minorities and medically underserved groups. Reports should include details on the number and type of research programs specifically targeted to these groups, and the contributions of ethnic minority scientists and community groups to the research priority-setting process. At the same time, NCI should improve efforts to disseminate information about cancer to patients, clinicians, and others in ethnic minority and underserved populations, and create a system to assess effectiveness. Cancer survivors in ethnic minority groups should be tapped as important resources for educating others in their communities about cancer.
We encourage reporting in a variety of styles, including one based on what might happen if all Americans had the same rate of cancer at each site as the lowest rate of any ethnic group. For example, if all Americans had the low rate of lung cancer as Hispanics, and the low rate of cervical cancer as the white population, etc., the mortality from cancer would be reduced by 50 percent. It is a goal worth pursuing as long as there were not promises of quick results.
Throughout our study, the National Cancer Institute was generous in providing the information that we requested, and it is clear to us that NCI is undergoing dynamic change. In fact, some of our suggestions for improvement today have already been suggested internally at NCI and are in the process of being implemented. We commend NCI's plans to increase its commitment to behavioral research, especially if some of that research is specifically targeted toward minorities and the medically underserved.
The National Cancer Institute is a great national resource that is vigorously pursuing the goal of reducing cancer in America. From the beginning of the "War on Cancer" it has been forced to grapple with the continuous demand for quick results. There was even a strong notion that the problem of cancer would be solved by 1976. But we now know that there are no quick fixes in cancer research. A big breakthrough is often the result of years of patient and sometimes unrecognized effort. Cancer is not one but more than 100 diseases. We hope our recommendations will help NCI and all of NIH tackle this difficult health problem in order to further the health of all Americans.
We are happy to answer your questions. Prior to asking a question, please step to an aisle microphone and state your name and affiliation.