By Kathy LaTour

More than 250,000 Navajo Indians comprise the Navajo Nation, the largest Native American population in the United States. Their home, Dine Bikeyah, or “Navajoland,” extends into Utah, Arizona and New Mexico, covering more than 27,000 square miles, which represents a space larger than 10 of the 50 states. It also includes some of the most remote places in the country.

A nation proud of its heritage and language, which continues to be spoken by the 88 delegates to the Navajo Nation Council Chambers at official functions and by many of the Nation as their first language, the Navajo Nation continues a culture rich in spiritual tradition and grounded in nature, where medicine men and women work in conjunction with traditional medicine.

But to speak of cancer, translated as “the sore that does not heal,” is taboo. The Navajos believe that speaking of the negative brings it forth. It was in this culture that Nellie Sandoval was raised, living on Nation lands early in life before moving to Farmington, New Mexico, at age 11.

Sandoval earned a master’s degree in guidance and counseling, returning to Farmington to work as a high school guidance counselor. Her breast cancer diagnosis in 1989 led her to use her skills in a new way, becoming an activist in reaching Navajo women about breast cancer. “When I was diagnosed, I needed support from other women and found nothing in our town. I found some other women and we started Reach to Recovery and a support group. ”

As the only Native American volunteer, Sandoval found herself at the bedside of Navajo women diagnosed with breast cancer. She was appalled to see young women presenting with late-stage breast cancer who ultimately died in their 30s and 40s. Sandoval knew that despite some significant cultural issues, she had to find a way to educate Navajo women about early detection.

“Touching oneself is taboo in the Navajo culture,” says Sandoval, “and yet you cannot find a lump if you don’t. And talking about cancer is inviting negative forces into your life in our culture. But I knew I had to do something.”

Sandoval reached out to her oncology nurse, Fran Robinson, and together the women found funding to create two informational videos in Navajo with English subtitles and started a media campaign for early detection that has increased the number of women getting mammograms and prompted the local medical center to buy additional mammography equipment. “We needed to change the meaning of cancer for Navajos. Calling something ‘a sore that does not heal’ means it’s hopeless. There are people surviving. We need to say you can heal,” Sandoval says.

Even scolding by tribal leaders didn’t deter Sandoval, who says she decided early on to not let disapproval deter her when women were dying needlessly.

Understanding Cancer Disparities

While the United States offers the most advanced cancer treatment in the world, issues of race, culture, demographics, education, economic status and institutional prejudice and discrimination have lent themselves to the reality that not all Americans are offered the same resources for cancer prevention, diagnosis, treatment or follow-up. But in the past decade, cancer “disparities” in minority and underserved groups have become the focus of many in the cancer community.

Individual pioneers such as Sandoval have implemented unique programs to improve prevention, access and follow-up in their communities. Federal and state governments have provided funding to create programs to assist the indigent and address issues of prevention. In addition, research funded by the government aims to find underlying causes and solutions to overcome the barriers to equal treatment for all Americans.

The statistics that prompted this funding have been gathered by various entities for a number of years. The National Cancer Institute’s Center to Reduce Cancer Health Disparities (crchd.nci.nih.gov), created in 2001 to “reduce the unequal burden of cancer in our society,” has gathered statistics showing that while all deaths from cervical cancer are preventable, 4,000 American women died of the disease in 2005. And researchers even know the predominant demographics of these women: African-American women in the South, Hispanic women along the Texas-Mexico border, Vietnamese women and white women in Appalachia and the rural Northeast.

Another study showed African-American patients are less likely than white patients to receive recommended chemotherapy for stage 3 colon cancer. Indeed, any African-American man is more likely to die of cancer than his white counterpart despite an overall decline in the rate of death from cancer. African-Americans experience a higher mortality with cancers of the prostate, colon, breast, cervix and lung than a white patient with a comparable tumor. Native Americans, which include more than 560 federally recognized tribes that speak 217 native languages, have the poorest survival from all cancers combined than any other ethnic group. Less-educated Americans who live in rural areas are less likely to have a family doctor and follow prevention and screening recommendations for the general population.

Statistics for the Hispanic population are equally disappointing. According to data compiled by the Intercultural Cancer Council (www.iccnetwork.org), cervical cancer incidence is two to three times higher in Hispanic women than in white women, and only 38 percent of Hispanic women age 40 and older have regular mammograms. While Hispanics represent about 12 percent of the U.S. population, they make up 25 percent of the country’s uninsured.

According to a recent report on cancer health disparities commissioned by the Department of Health and Human Services, minority and underserved populations are more likely to be diagnosed with and die from preventable cancers and be diagnosed with late-stage disease for cancers that are detectable through screening at an early stage. In addition, these populations receive either no treatment or treatment that does not meet current standards of care, die of generally curable cancers and do not have the benefit of pain control and other palliative care.

Research shows multiple contributors to such disparities, ranging from language issues to biases based on cultural or racial differences to the complexity of the healthcare system to simple economics equated to the number of uninsured and the cost of cancer care—all of which are under new scrutiny.

Leading the Movement

When Harold Freeman, MD, founder and medical director of Harlem’s Ralph Lauren Center for Cancer Care and Prevention, finished his cancer surgical residency at Memorial Sloan-Kettering Cancer Center in 1967, he chose to move 100 blocks up the island of Manhattan to Harlem, a community of predominantly poor African-Americans.

“I began to see patients immediately who were coming in with very late cancer—in particular, late breast cancer,” Dr. Freeman says. “They were beyond surgical intervention, and it changed my whole career because I began to understand that the skills I had were good for many patients but not for the patients who were coming in.”

Indeed, in those first years, half of the 600 breast cancer patients Dr. Freeman tracked came into Harlem Hospital Center with stage 3 and 4 disease—considered incurable. Only 6 percent had stage 1 disease. After five years, only 39 percent of the 600 were alive compared with national statistics of 70 percent.

A turning point came for Dr. Freeman in 1978 when then-New York governor Hugh Carey created a “Blue Ribbon” committee to advise him on what should be done to reduce breast cancer mortality in the state. After Dr. Freeman relayed the statistics he had collected, the committee chose to put their resources into Harlem.

With the funds, Dr. Freeman set up two screening programs: the Breast Examination Center of Harlem, an outreach program of Sloan-Kettering that offers free breast and cervical cancer screenings; and, with additional funds from the American Cancer Society and other sources, a screening center at Harlem Hospital Center. The screening programs began in 1979 and continue to operate.

A communications campaign in the community brought in women for screening, which, Dr. Freeman says, created another set of problems for those needing biopsies. Free treatment was available, but getting the women to return for diagnosis was difficult because of distrust, fatalism, a lack of understanding of the need and barriers set up by the healthcare system. Women whose screening had indicated a problem were not coming back for follow-up until years later when the cancer was untreatable.

While president of the American Cancer Society in 1989, Dr. Freeman held the “National Hearings on Cancer in the Poor” in seven U.S. cities, where he found barriers to early diagnosis and treatment similar to those in Harlem. As chairman of the President’s Cancer Panel for 11 years, he explored how to impact national barriers while also working in Harlem to find answers to community problems.

“I have found that poverty is not a hopeless condition,” he says. “I cannot change who is poor, but I have shown that you can change the things that poverty causes if you are thoughtful and don’t give up.” For Harlem, Dr. Freeman found that “harnessing the energy of the community to help people in their own community” was a possible, workable solution.

In 1990 he began the nation’s first Patient Navigator Program (see sidebar) at Harlem Hospital Center that would train community members who were sensitive and caring. They were matched with patients who needed follow-up to help them “navigate” the journey—dealing with the healthcare system, appointments, financial issues and emotional support.

“Before screening and navigation programs were put in place in Harlem, the five-year survival rate from breast cancer was 39 percent in 600 patients treated in Harlem Hospital ending in 1986,” Dr. Freeman says. “Only 6 percent of these patients had early breast cancer at the time of initial treatment. After the interventions of screening and navigation were applied, the same five-year survival for breast cancer increased to 70 percent for 325 patients treated at the same hospital over a six-year period ending in 2000.”

In addition, Dr. Freeman adds, 41 percent of the patients had early breast cancer at the time of diagnosis. During both time periods, the demographics of the patients were unchanged; they were poor, most were African-American and half were uninsured.

While Dr. Freeman gathered statistics in Harlem, other disparities researchers were active in other parts of the country. Lovell Jones, PhD, directs the Center for Research on Minority Health at M.D. Anderson Cancer Center in Houston (www.mdanderson.org/departments/crmh). The federal government funded CRMH in 1999 to explore disparity issues in research, patient care, education and prevention. In turn, Dr. Jones brought together individuals working in these areas to host the first Biennial Symposium on Minorities, the Medically Underserved & Cancer in 1987. The meeting led to Dr. Jones and Armin Weinberg, PhD, of Baylor College of Medicine, to form the Intercultural Cancer Council in 1995 “to promote policies, programs, partnerships and research to eliminate the unequal burden of cancer among racial and ethnic minorities and medically underserved populations in the United States and its associated territories.”

Like Dr. Freeman, Dr. Jones found that successful solutions had to come from within the community with mechanisms for sustaining what was started. Dr. Jones relates the situation in a small town without a health prevention structure where his team went to discuss issues of cancer prevention, such as obesity and nutrition. The water was brown in this community and the residents said they wouldn’t drink it because they thought it was contaminated. “I often say perception is reality to those that perceive it,” Dr. Jones says. “In discussing obesity, they again told us that if we wanted to solve obesity in their community we needed to solve the water problem, because buying pop is cheaper than buying water.”

Demonstrating in the community that you care about their problems, Dr. Jones says, builds confidence and relationships that allow a more holistic approach to problem solving. He says it’s a biopsychosocial approach of looking at the whole individual and building infrastructure so that “when we leave, the people will have a new way to address the problem on their own.”

Stephen P. Jiang, current chair of the ICC board and director of mission delivery for the California division of the American Cancer Society, says that being a Chinese-American has made him particularly aware of the challenge in understanding barriers in the Asian-American population. Jiang says that the complications begin with the fact that more than 50 ethnicities are included in the term “Asian-American.”

“There is very little national capacity to differentiate data from second- and third-generation Japanese-Americans from recent immigrant populations who are unfamiliar with or distrust Western medicine,” he says. “This fact is particularly important in cancer because prevention and early detection make a tremendous difference in incidence and survival rates.” Treating Asian-Americans as one homogeneous population hides the actual cancer statistics of the smaller Asian-American groups, Jiang says. The once commonly accepted category of “Asian Americans and Pacific Islanders” included not only the more than 50 Asian nationalities but also the indigenous populations of the Pacific basin, including Native Hawaiians, Samoans and other Polynesian and Micronesian ethnicities.

Further complicating the issue, Jiang says, is immigration and the length of time a person has been in the country, which matters because some studies have correlated length of residency in the United States to increasing cancer incidence, pointing to adoption of American lifestyle and diet as a contributing factor to the increasing number of cancer diagnoses in Asian-Americans.
Jiang, who has been active in the ICC for 10 years, has seen the organization’s biennial symposium, the only national scientific conference focused solely on reducing cancer disparities in minority and medically underserved communities, grow from a meeting of a few hundred to one where attendance is limited to 1,500 attendees.

“In the last five years we have created a network of community-based individuals who work together regionally to share information they learned at the biennial symposium and implement model programs at the local level,” Jiang says. “One of our goals is to see that every state’s comprehensive cancer control plan addresses cancer disparities.”

The next symposium, being held in Washington, D.C., in April of 2006, will continue to focus on gathering statistics, finding ways to include more minorities and medically underserved in clinical trials and creating plans to overcome barriers in an environment. Jiang calls the symposium a community event that includes survivors, researchers, clinicians and students.

“The name tags only have names, no letters or affiliations. We are all there to communicate. This results in the kind of interaction I saw at the last meeting where an elderly African-American woman was talking sincerely about her issues with the man next to her, who just happened to be Andy von Eschenbach, the director of the NCI.”

The National Perspective

In 2001 Dr. Freeman was appointed the first director of the NCI’s Center to Reduce Cancer Health Disparities. The center has, in the past four years, funded research and outreach programs that address three challenges identified by the center: closing the gap between discovery and delivery, removing barriers that prevent the benefits of research from reaching all populations and uniting the drive to reach scientific truth with social justice.

Funds became available to institutions through the Community Networks Program and others to research numerous aspects of cancer health disparities in populations across the country—and implement programs to overcome those barriers.

One such grant went to Mark Dignan, PhD, a professor in the Department of Internal Medicine and director of the Prevention Research Center at the University of Kentucky. Dr. Dignan has researched cancer health disparities since 1983. Today he oversees a network of institutions working with community partners in the Appalachia Community Cancer Network to identify ways to impact prevention and early detection in the Appalachian population. “This population is very rural and is characterized by low income and low educational levels,” he says. “Culturally, they have a history of not doing well with cancer, so there’s a sense that any cancer outcome will be bad.”
The programs focus on working in the community, training local residents to be health educators and speaking to the population through institutions they trust, such as the church. Program leaders are also reaching out to primary care physicians to increase screening for colorectal cancer.

“We recognized that public education alone is likely to be unsuccessful for colorectal cancer, so we are working with physicians first to increase screening,” says Dr. Dignan, who concedes that paying for screening remains a challenge—one that he hopes his research will help address.

Across the country in Seattle, Beti Thompson, PhD, oversees another grant site, the Hispanic Community Network to Reduce Cancer Disparities project at the Fred Hutchinson Cancer Research Center. Dr. Thompson promotes cancer awareness and education efforts in the Yakima Valley, an agricultural area in Washington settled by a large Hispanic population.

The population struggles to exist, she says, much less pay attention to health problems they see as insurmountable when they have no time, no transportation, no child care and no Spanish-speaking providers.

To address these issues, Dr. Thompson hired bilingual members of the community and planned family activities to address the Hispanic culture’s strong family unit. “We share space with the farm workers union, and we don’t see patients but we refer them to places with free care or a sliding scale,” explains Dr. Thompson, who says it’s ironic that it’s easier to get free treatment in Washington than free screening.

In New Mexico, Barbara McAneny, MD, chief executive officer of the New Mexico Cancer Center in Albuquerque, the largest cancer center in the state, takes pride in the fact that the practice has never turned away a patient for lack of ability to pay in a population that is 26 percent uninsured and 26 percent on Medicare or Medicaid.

Dr. McAneny says the practice has had a steady increase in patients coming from all over the state in addition to growing numbers at the satellite offices in Silver City and Farmington. Construction began in November for a small cancer center in Gallup to serve the Native American population. Recognizing cultural barriers, Dr. McAneny says access is the key. “One of the barriers we have found is the distance people had to drive to get to healthcare,” she says. “If a patient is traveling to you, they are less likely to make it through treatment, and half a course is not enough. People were driving down here two hours and getting treatment and driving back. It didn’t work. We even tried putting people up in hotels. To them this is a foreign culture. They are used to the open areas and blue sky and being close to their family for support. All healthcare is local.”

The new center, being built in conjunction with a private foundation, will meld the two worlds, Dr. McAneny says. Designed with input from Native American healers, it includes a Hogan, a traditional Navajo dwelling. In addition, patients can bring a medicine man or the center can provide one.

Dr. McAneny, who reminds folks that whites are the minority in New Mexico, says the main clinic in Albuquerque reflects these issues with floor-to-ceiling windows that fill the large waiting rooms with light. Neutral colors of nature cover the walls along with art—all for sale as a way to support the cancer center’s foundation, which helps patients meet the non-medical expenses of cancer.

But among all the cultural barriers, Dr. McAneny says the economic issues are the hardest, particularly in today’s managed care environment and with new Medicare reimbursement codes that don’t include codes for support staff, such as her social worker or dietitian.

Dr. Freeman says many of the projects funded in the past five years are now showing results, but that national change will take time. “We have developed minority researchers and we have created a lot of awareness in the community about cancer and have a large number of publications. It’s a great first step.”