Dr. Erin Kobetz, a Driving Force Addressing Women's Cancer Disparities in
Miami's 'Little Haiti'
In Little Haiti, the neighborhood in which Miami's Haitian community resides?and the largest enclave of Haitian settlers in the U.S.?the incidence of cervical cancer is roughly four times higher (38 per 100,000) than that of black women (9 per 100,000) in the Miami metropolitan area. When placed side by side, these numbers are alarming, according to Erin Kobetz, Ph.D., M.P.H., Assistant Professor at the Miller School of Medicine, University of Miami, Florida. These figures are even more disturbing given that black women all across the U.S. are already at an increased risk of developing and dying of cervical cancer.
"No one should have an incidence of cervical cancer higher than normal," says Kobetz. "This is a preventable disease. No one should die from it." Kobetz, who is also Director of the Jay Weiss Center for Social Medicine and Health Equity at the Miller School of Medicine, set out to understand why this disparity exists and see if she could lower these numbers. To do this, she enlisted the help of Haitian community partners to work with the university.
"Community leaders told me early on that 'no one who looks and talks like you will be able to collect data,'" says Kobetz. "So we learned and worked with indigenous people who spoke the language and knew the customs." Kobetz relied on community-based participatory research (CBPR) methods to understand and address the excess burden of cervical cancer that Haitian women were experiencing. "The methodology explicitly recognizes that there is tremendous variability within urban centers, and that we need to engage stakeholders within individual neighborhoods to effectively attenuate cancer health disparities," says Kobetz. The collaboration led to the development of Patnè en Aksyon (Partners in Action) in 2004, a partnership that included academic investigators from the University of Miami and key community members from Little Haiti, including social activists, heads of local organizations, Haitian physicians, and religious leaders.
Kobetz's research found that disparities are not simply about availability of care, but among different ethnic groups, potential differences in knowledge of the human papillomavirus (HPV) — the virus that has been identified as the main cause of cervical cancer among Haitian women. Her research showed that only 22% of Haitian women had knowledge of HPV, while 70% of black females had heard of the virus. Moreover, only 8% of Haitian women were knowledgeable that HPV is a sexually transmitted disease while 75% of black women understood that it is. Similarly, only 18% of Haitian women had heard of HPV's link to cervical cancer, yet 54% of black women were aware that HPV is the principal cause of cervical cancer.
Not surprisingly, only 44% of Haitian women 18 and older had received a Pap smear, compared with 84% of black women. Haitian women fear that the speculum inserted during a Pap smear could cause the vaginal walls to become permanently flaccid. "The underutilization of the Pap test and general distrust of health research in Little Haiti has led to further disparities in cervical cancer in Miami Haitian women," according to Kobetz.
Also exacerbating the health disparity is Haitians' belief that you can't be sick if you have no symptoms. "That's a really big challenge for cancer prevention, because by the time people are symptomatic, our ability to treat them is significantly reduced," says Kobetz.
Another challenge to this urban health problem is the fact that the Haitian community of roughly 30,066 residents suffers from a dearth of healthcare providers and even fewer who speak Haitian Creole, the language that most of the community speaks. Moreover, approximately 39% are unemployed and 85% have no healthcare coverage.
Overcoming language and cultural barriers, and providing education by way of Haitian community health workers may be one way of solving the problem. Kobetz discovered, not surprisingly, that Little Haiti's women were more comfortable when paired with community health workers of Haitian descent. She also found that 98% were more comfortable using an HPV self-sampler test at home than going for an exam at a doctor's office. The device is very thin and circumvents the cultural barriers to Pap smears. Furthermore, bringing the intervention to the home avoids dealing with issues of insurance status.
Patnè en Aksyon has become the model of community engagement for the University of Miami, as well as a recently funded NCI/CRCHD Community Networks Program grant, and a project addressing cervical and colorectal cancer disparities. Since the partnership was organized, Kobetz and her colleagues have successfully secured nearly $10 million in extramural research funding to address cancer disparities. Kobetz has also been personally recognized for her contributions to cancer disparities research by numerous agencies and organizations.
In addition to Patnè en Aksyon, Kobetz has contributed significantly to other underserved communities. In her role as Director of the Disparities and Community Outreach Core (DCOC) at the University of Miami's Sylvester Comprehensive Cancer Center, she supports disparities-focused, biobehavioral, epidemiologic, and cancer prevention and control researchers from a wide range of academic disciplines. Using an extensive network of community contacts, DCOC helps these investigators culturally tailor their research designs, recruitment strategies, and data collection to the community of interest.
