'Navigator' guides patients of color

Electra Sandefer was shocked when her mammogram came back abnormal. She had no personal or family history of breast cancer and had been doing everything to keep it that way.

''I cried and wondered what I did to deserve this," recalled Sandefer, 43, a writer who lives in Dorchester. ''I thought my life was going to be cut short."

Hours after Sandefer got the news, a stranger called her at home and said, ''We're going to get through this."

It is Debra Crowley's job to parachute into the lives of Massachusetts General Hospital patients like Sandefer after they have received a scary diagnosis and make sure they get the health care they need.

Too often, research shows, blacks, Latinos, and those who speak limited English are less likely to be screened, diagnosed, and appropriately treated for diseases like breast cancer than whites. Three papers in the current issue of the New England Journal of Medicine show progress in identifying ethnic health disparities and screening people at risk, but the treatment gap remains wide.

So four years ago, Mass. General started its Avon Breast Cancer ''patient navigator" program to help women like Sandefer cope after they've had a bad mammogram. The program is part of a growing effort by hospitals to help non-whites manage their illnesses.

''You are anxious enough already when you find out something is wrong with your breasts," Crowley said. ''We just try to make the process smoother and remove any barriers."

Sometimes, Crowley visits a patient's home to go over mammography results, takes them to an appointment, or listens to their fears. People who are scared or have trouble making appointments, filling out forms, and understanding the doctor's instructions can be turned off from following through with their care, Crowley said.

So far, the program has screened more than 700 women for breast cancer, resulting in 54 diagnoses. It also operates at the hospital's Chelsea clinic and the Mattapan Community Health Center, targeting African-American, Haitian, and Latino women, half of whom do not speak English. More than 40 percent of the patients have no health insurance.

While white women are more likely to get breast cancer, women of color, especially black women, are more likely to die from it -- possibly due to later detection, according to the American Cancer Society.

''For [black and Latin women] it's always been family first, everyone else second, and ourselves third," Sandefer said. ''This has been passed through generations like brown eyes."

The Avon Foundation gave $2 million for the program to run until next summer. Organizers are now waiting to see if more funding will become available.

Meanwhile, other programs are taking the same approach to making health care a more level playing field. Mass. General is slated to start another, internally funded program to address disparities in diabetes screening and management.

At Cambridge Health Alliance, a task force and support group helps more than 300 diabetes patients understand how to live with the disease -- from testing their blood sugar at home to making dietary changes.

After sensing Sandefer's anxiety, Crowley arranged to speed up her test results, handling the paperwork and transportation, and personally delivering slides from Sandefer's first mammogram.

A few days after her biopsy, Crowley called Sandefer to tell her the lumps in her left breast were not cancerous.

''She put herself out there and helped put me at ease," Sandefer said. ''I am not scared anymore."

''The most important think is she understands," Sandefer said. ''She doesn't think it's silly when you cry or start planning your will."