Navigators help minority patients overcome barriers in medicine

In 1967, young cancer surgeon Harold Freeman had a question: Why were so many of his Harlem patients coming in with incurable late-stage breast cancer - on their first visit?

"It was not a matter of whether we could treat breast cancer, because we could," he said.

By the mid-1980s, Freeman had startling statistics: of 606 consecutive women treated at Harlem Hospital Center in New York City over 22 years, 49 percent arrived with stage 3 or 4 cancer.

Seeing the women struggle to access and pay for care, Freeman conceived the patient navigator - a new kind of health care worker who would steer patients through the complexities of the health care system.

Today, Freeman's navigators are seen as one solution to America's well-documented racial and ethnic disparities in medicine. Federal health officials are spending $75 million to test patient-navigator pilot programs around the country, including one that spans Utah and Montana and aims to help American Indians.

American Indians and Alaska Natives, both men and women, continue to have the country's poorest five-year survival rates for most kinds of cancers.

Run by the Huntsman Cancer Institute in Salt Lake City and Sletten Cancer Institute in Great Falls, Mont., the pilot program will examine whether patient navigators make a difference in American Indians' cancer screening rates and health care.

"There's great concern about Native Americans," said Randall Burt, a gastroenterologist who is Huntsman's senior director of prevention and outreach. "They're not receiving the level of cancer care or prevention that they need to."

Uncovering disparities

Even when patients' insurance coverage, income, age and severity of conditions are comparable, there are significant differences in how minorities are treated, the federal Institutes of Medicine found in a 2002 report.

Minorities are less likely to receive even routine medical procedures and receive lower-quality services.

Economics, a lack of health insurance, limited access to care and a spotty understanding of the health care system all play into the problem, doctors say. Some patients need continuing assistance, said Clem Bezold, chairman of the Institute of Alternative Futures, an Alexandria, Va.-based organization aimed at reducing disparities.

"Once [minorities are] screened," Bezold said, "the question is: Do they get into the treatment and can they follow the routine of treatment and do they understand it?"

In the 1960s, Freeman had initially thought a lack of cancer screenings in Harlem was behind the disparities he was seeing.

"The first thing I did was set up sites where women with breast cancer in Harlem could receive free screening and mammograms, even if they couldn't pay," he said.

But that revealed another set of problems. Most of the women receiving the free or low-cost mammograms were poor and at least half were uninsured, which meant those with abnormal findings couldn't afford the biopsies and treatment they needed.

In 1988, Freeman became president of the American Cancer Society. Throughout the country, he heard from America's medically underserved.

"Whether white or black or Native American or Hispanic or Asian, they said some things that were universal: 'We meet barriers when we attempt to get into the health care system for treatment, even when we have cancer,' " he said.

Navigating to success

Freeman created the first navigators in 1990, as Harlem Hospital's director of surgery. He reached out to non-professional people whose "compassion, articulateness and concern" made them good candidates.

Besides poverty, many Harlem patients faced communication barriers: They didn't understand what their doctor told them, or didn't speak English at all or distrusted the health care system. Others struggled to keep track of appointments with surgeons, radiologists and internists or needed help with transportation and day care for their children.

"Essentially, women perceived the process of being diagnosed as being more painful than the pain was," Freeman said.

Navigators helped women to enroll in public health insurance, to get free, federally-funded cancer screenings and free prescription drugs provided by pharmaceutical companies.

"There is an awful lot of support systems that are available that people don't know about," Freeman said.

Harlem Hospital's new numbers? For a six-year period ending in 2000, 325 women were diagnosed with breast cancer. But 41 percent were diagnosed with stage zero or 1 cancer; only 21 percent had stage 3 or 4.

And their five-year survival rate - once as low as 39 percent in the mid-1980s - was now at 70 percent.

'Vital to survival'

Today there are about 600 navigator programs around the country, run by government agencies, non-profit organizations and corporations, said Freeman, now president of the Ralph Lauren Center for Cancer Care and Prevention in New York City. Patient navigators also are working in Canada and Europe.

At the AMC Cancer Research Center in Colorado, researcher Linda Burhansstipanov paired navigators with American Indian women 40 and older in Denver and Los Angeles. They worked in Native American Women's Wellness through Awareness (NAWWA), a program aimed at boosting breast cancer screenings in urban American Indians.

Not only did the number of women participating more than double, there was a significant drop in canceled appointments and a jump in clinic calls and visitors.

Patient navigator Lisa Harjo said she strives to help her Colorado patients understand their experience in a culturally sensitive way. That empowers them to mobilize, make appointments and work with doctors to battle disease, she said.

"We're . . .finding one thing that is so vital to survival is that personal sense of who you are and that cultural sense of who you are," she said.

Lisa Rosetta covers health policy and reform for the Salt Lake Tribune. lrosetta@sltrib.com