Haitian-born community leader Marleine Bastien had seen it all too often: women from Miami’s Little Haiti neighborhood diagnosed with advanced cases of breast or cervical cancer.

“It’s very sad. By the time we see clients, they already have serious pain because they haven’t gone for yearly checkups,” she says. “By the time they get medical attention, it’s too late.”

From University of Miami medical researcher Erin Kobetz, she learned startling statistics: 38 of every 1,000 women in Little Haiti had cervical cancer — more than four times the rate of non-Haitian women of African descent in Miami-Dade County and twice the rate of women in mostly-Hispanic Hialeah. And breast cancer had metastasized and spread in 45 percent of women in Little Haiti by the time it was diagnosed, compared to only 10 percent of women from other Miami-Dade neighborhoods, according to numbers from the Florida Cancer Data System Registry.

Spurred by that information, the two women launched a culturally- sensitive health program five years ago that is now beginning to shine light on the reasons behind the cancer proliferation and offer hope for combating it. One example: an at-home, self-testing kit for cervical cancer that may help overcome barriers to seeking medical attention.

Cervical cancer is the easiest female cancer to prevent, according to the U.S. Centers for Disease Control and Prevention. Simple screening by Pap smear and a test for the human papilloma virus (HPV) can prevent most cases, it says. Powerful HPV vaccines also are widely available. So while it used to be the leading cause of cancer death for women in the U.S., it has declined significantly over the past 40 years because of increased screening.

For breast cancer, regular mammograms and exams can reduce mortality by 30 percent among women 50 and older, the CDC says.

But the women in Little Haiti had a number of factors working against them when it came to cancer prevention and early detection, Kobetz and Bastien found. The residents had moved from Haiti, with its devastating poverty and lack of medical facilities, to a Miami neighborhood only five miles from the world-class medical facilities at the University of Miami School of Medicine — but they often weren’t accessing medical care.

When previous researchers had tried to learn more about their health problems, questionnaires were left blank and phone calls weren’t answered. Bastien, a licensed clinical social worker and 20-year leader of Haitian Women of Miami, says she knew why. Some of the women are likely undocumented, she says, and fear contact with authorities, from police to medical researchers.

Adding to the distrust: the memory of Haitians’ treatment when HIV/AIDS was discovered. For three years in the 1980s, the U.S. Centers for Disease Control and Prevention had listed being Haitian as one of the four main risk factors for the deadly syndrome — although the theory was later completely discounted.

“That set the stage for a lot of racism against the Haitian people. So it’s not surprising that they can be incredibly skeptical about taking part in research and care programs by the federal government,” says Kobetz, an assistant professor of epidemiology and public health at the UM School of Medicine.

Another reason that some of the women might not be getting the care they need: a language barrier. Plus, many of the women prefer to talk about health issues in person — not on the phone or in writing, Bastien says.