Reducing cancer health disparities is one of the key challenges for the National Cancer Institute (NCI). In 1989, former Secretary of Health and Human Services, Louis Sullivan, M.D., organized the NCI Black Leadership Initiative, and formation of a Hispanic and Appalachian Leadership Initiative soon followed in 1992.
In 2001, NCI formed the Center to Reduce Cancer Health Disparities to implement critical tasks in translating discovery into delivery. In 2005, NCI launched a new program to reduce cancer deaths among minority and underserved populations through $95 million in grants that will fund community-based projects in geographically and culturally diverse areas of the country. The new initiative, the Community Networks Program (CNP), is part of NCI’s ongoing efforts to understand why some population groups — often minorities and the poor — have higher cancer rates than others, and to eliminate disparities by involving local communities in education, research, and training.
One of the leaders in reducing cancer health disparities is Harold Freeman, M.D., a leading physician, author and scholar on the issue of poverty and disparities in cancer care. He has focused his career on providing quality cancer care and treatment to underserved communities. Freeman was director of surgery at Harlem Hospital from 1974 to 1999 and now serves as both the medical director of the Ralph Lauren Center for Cancer Care Prevention and professor of clinical surgery at Columbia University College of Physicians and Surgeons in New York City. Freeman has served as the director of the NCI’s Center to Reduce Cancer Health Disparities and is currently a senior advisor to the director of NCI.
About 15 years ago in Harlem, Freeman started a program known as the “Patient Navigator”. The purpose of the program was to develop interventions to reduce the time of delivery of standard cancer services, cancer diagnosis, and treatment after identifying an abnormal finding from a cancer detection procedure. In 2005, NCI initiated a patient navigator research program based on Freeman’s Harlem model. Patient navigator interventions, by identifying innovative methods for overcoming access barriers for people in underserved communities, should have a substantial impact on reducing cancer health disparities and the burden of cancer within the next decade.
BenchMarks sat down for a talk with Freeman.
What do you feel are some of the primary causes of cancer health disparities in America?
Cancer is a disease that reflects the human condition. One way of looking at cancer is that it is a paradigm of three interacting factors: low economic status or poverty, culture and social injustice. These are extremely powerful factors that determine the conditions in which people live. The factors can be viewed separately, but in reality they overlap with one another. The challenge is to understand the interrelationship between these three factors and their effect on the spectrum of disease from prevention, early detection, diagnosis, treatment, survival and mortality. However, poverty drives these factors, regardless of race, and is the universal force that causes decreased survival.
What is the effect of culture on creating barriers for access to health care?
Culture denotes similarities in physical and social environments, lifestyle attitudes and behaviors, and belief systems and values that are shared by a population of people. We need to understand the particular manifestations of culture in different groups. Culture is a powerful determinate because it affects the way people communicate, how they receive information and how they give information. It shapes your world view and how the world sees you.
However, culture is not synonymous with race. Many cultures exist within racial or ethnic groups. For example, an increasing number of people are moving from various countries in Africa to Harlem, New York. These new arrivals are referred to as African Americans, but their cultures are distinctly different from the African Americans who moved north from the American south decades ago.
I believe that culture can have a powerful influence in augmenting or diminishing effects on health. For example, Seventh Day Adventists have a culture that is driven by religious beliefs. In their culture, they eat a vegetarian diet, while smoking and drinking alcohol is not condoned.
Following a diet low in fat and salt may help reduce health risks even in a poorer population. Similarly, health effects of smoking and alcohol consumption could be avoided. This is in contrast to the culture of African Americans in Harlem, many of whom smoke and drink and eat a diet high in fat and salt. This diet is part of their cultural identity. Drinking alcohol, smoking and eating a high fat diet are cultural conditions that could accentuate the problems associated with poverty.
In studies I conducted, we compared poor African American communities in Harlem with poor Caucasian groups in Harlan, Kentucky. In Kentucky, the health risks and outcomes related to smoking, drinking and diet are very similar to those of African American populations in Harlem. The excess in mortality rates in these diverse groups may be driven primarily by the effects of poverty and culture, not by race itself.
How can culture be used to modify or change attitudes about health care?
When discussing culture, we must keep in mind that people are not assigned to a culture for life. As groups of people move into new areas, they bring their culture with them, but can adopt the culture from their new environment. For example, Hispanic women, particularly Mexican, bring with them a cultural belief that certain parts of their body should only be touched by their husbands. However, if this cultural belief causes a woman to refuse a breast or pelvic examination, then we must work with her to adopt new beliefs so that these examinations help her maintain good health.
We have also studied cultures in Native American populations. Some Native American tribes do not use the word “cancer.” When asked why they cannot discuss this disease, they say that in their culture if they say the word “cancer” it will bring the disease on their families. When working within a culture, it is necessary to understand the cultural beliefs of that population of people.
What is the role of social injustice in creating health disparities?
Social injustice, such as racism, is a critical factor in creating and maintaining disparities.
Populations of people who have been treated unfairly, historically and currently, will suffer disparities. Our country has a history of legalized segregation that has played a powerful role in the relatively low socioeconomic status of African Americans, American Indians and Alaska Natives. Studies report that African American patients are substantially less likely than white patients to undergo curative surgery of early-stage lung cancer, even though they have the same insurance coverage and similar economic level. I suggest that we are viewing one another through a lens of race. This lens may cause us to create false assumptions about people we know nothing about and result in harm to members of some racial and ethnic groups.
Vision through the lens works both ways; how do patients see their health care providers? If a patient does not trust their physician, or avoids participating in clinical trials for fear of abuses that occurred in the past, then they are looking through the lens, causing detrimental results. Assumptions based on a view from either side of the lens of race can have profound effects on unequal treatments creating health disparities.
What are other factors contributing to the unequal burden of disease?
I believe there has been a disconnect between discovery and delivery. Some people are not benefiting from the research that the NCI is doing and that is a critical determinate of disparities. Services are not being delivered to those who need it most.
Much of the disparity in cancer outcomes is a result of the cancer type, time of diagnosis, and continuity of cancer care, not the disease itself. There is an unequal burden of disease in our society that is a challenge to science and a moral and ethical dilemma for our nation.
How can cancer be used as a social marker?
Current studies of cancer mortality rates indicate that cervical cancer could be used as a marker for low access to healthcare. This should not be a mortal disease, yet there are 4,000 women dying of this disease every year. Databases developed by the NCI have provided data of incidence and survival rates, as well as deaths, from cancers within individual counties throughout the United States.
The data show that death rates vary across certain parts of the country. We found that women were dying from cervical cancer at higher rates in certain geographical areas. We also found people in these same areas were dying at a higher rate from other diseases, such as breast cancer, cardiac disease, and stroke. Our analysis showed that black women had higher rates of death in eastern and southeastern parts of the country. This raises the possibility of using the incidence of cervical cancer as a social marker to target geographical regions for intervention and education where death rates are highest.
How could the study of a social marker help direct resources — for example smoking prevention campaigns?
With respect to prevention, first we should determine what geographic regions need concentrated educational programs and intensely campaign in those areas. Once an area is identified, we need to determine what is driving disparities. When an area is targeted for intervention, you’re targeting the culture and the people in that region. Programs aimed at helping children adopt healthy lifestyles, eating a balanced diet to prevent obesity, and smoking prevention and cessation programs could be developed to match the culture of those living in that region.
Are underserved populations missing the message of prevention?
While working in Harlem, I have found that people are not getting screened and treated because they feel they can’t afford to pay for a test if they have no insurance. They are also concerned that if there is a finding of cancer, they will never be able to get the care they need.
For example, in Harlem we offered free colonoscopies to the first 100 people who came into the hospital. A group of people came in that we had never seen before and within two weeks the schedule was full. These were uninsured people who had heard our message and came in for screening. However, telling people that they need the test isn’t enough — they need to be reassured that a there is a system to support their care after the test is completed. Our messages of prevention may be causing heartaches in poorer communities because they know they need the test but can’t afford it.
What could we be doing that will reduce disparities in the future?
My personal feelings are that we cannot accept a society where people who have cancer cannot get treated. I am suggesting, and the President’s Cancer Panel has also suggested, that we provide immediate medical coverage for people who have cancer, suspicious test results, or diagnosis of cancer to ensure that no person with cancer goes untreated.
There should also be provisions for populations at highest risk to have access to screening and follow-up services and treatment for breast, cervical, and colorectal cancer. However, we must also stress that each individual is responsible for promoting their own health and well-being regardless of economic status.
With respect to the scientific community, we must continue to explore how human populations really differ and how to group people for biological and clinical study. The categories of black, white, Hispanic, Asian or Native American are not sufficient to give us this information.
One thing is certain — when someone develops cancer in America, whether they are rich or poor, insured or uninsured, they will be treated. The question is at what point in their disease they will be treated. We will pay for treatment and I suggest that we pay when we know it is cancer, because it will cost us more to pay for advanced cancer later.
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With a total population of 22.8 million, the Appalachian region includes 410 counties; all of West Virginia and parts of 12 other states and extends more than a thousand miles from the southern tier of New York to northeast Mississippi. In 2000, the poverty rate in Appalachia was 13.6 percent. It is noteworthy that the incidence of lung cancer in 1992 among white men in Kentucky was 111 per 100,000 while in the Appalachian area of Kentucky, a region characterized by high poverty, the incidence of lung cancer among white males in 1992 was 127 per 100,000.
U.S. cervical cancer mortality increased with increasing area poverty for women in all racial/ethnic groups. During 1995-1999, American Indian and Hispanic women in high poverty counties ( which comprise large parts of the Desert Southwest) had almost twice the cervical cancer mortality of their counterparts in low poverty counties. The cervical cancer mortality rates were respectively 45% and 37% higher for non-Hispanic white women and black women in high poverty counties than in low poverty counties.
1. NCI Disparities Leadership. From left, NCI Deputy Director Dr. Mark Clanton, NCI Center for Cancer Health Disparities Deputy Director Dr. Nadarajen A. Vydelingum, and former Center for Cancer Health Disparities Director (and current advisor to the NCI Director) Dr. Harold P. Freeman.
2. Cancer survivor HollyAnna Pinkham, a member of the Yakama tribe, worked with a patient navigator in setting up programs for cancer patients and their families. She models a traditional buckskin dress handed down within her family.(Photo: HollyAnna Pinkham)
3. The patient navigator can help cancer patients navigate the maze of health care options, potentially increasing survival rates.