With Community Collaborators, Erin Kobetz Wages War on Cancer
As a Miller School researcher in her first faculty appointment, Erin Kobetz, Ph.D., M.P.H., was surprised and alarmed at the cervical cancer rate she noticed in a small section of Miami. She checked and rechecked the data, but it clearly indicated a pocket of significant excess in a particular, but unfamiliar, grid.
“When you are looking at maps at an aggregate level it is very hard to distinguish whether what you are seeing is real or an artifact,” said Kobetz, assistant professor of epidemiology, who received her Ph.D. from the University of North Carolina, Chapel Hill and her master’s from Emory. “So I identified some cross streets, got in my car, and went to find this community. Despite being a Miami native, I realized very quickly I was in a part of the city I had never been before. But with the Creole signs, I assumed I was in Little Haiti.”
She was right.
And right there, according to her statistics, 38 of every 100,000 women had cervical cancer, a rate four times higher than observed in other minority enclaves throughout Florida. The statistic was even more alarming given that cervical cancer had long been easily preventable with an annual Pap smear. The high rate indicated a health disparity of the highest order.
The discovery almost six years ago and Kobetz’s relentless desire to help led to an unprecedented life-saving partnership between the Miller School and Little Haiti. Working hard to overcome historical, sociocultural and linguistic barriers, Kobetz sought out collaborators— including Larry Pierre, M.D., M.P.H., executive director of the Center for Haitian Studies, and Marleine Bastien, M.S.W, LCSW, executive director of Fanm Ayisyen Nan Miyami — Haitian Women of Miami — who helped her win the trust of a handful of residents in Little Haiti.
Together, they worked to dispel the mistrust that developed in the 1980s when being Haitian was erroneously cited as a risk factor for HIV/AIDS, and set about figuring out why the rate for cervical cancer was so high. The conversations — in grocery stores and Laundromats, on porches in the evenings and in church halls on Sundays — revealed that many Haitian women had cultural reservations about a Pap smear from a doctor. Some associated the test with possible sexual side effects, or even as a cause for cancer itself.
With the help of Pierre, Bastien, and other community leaders, Kobetz organized groups of Creole-speaking community health workers to recruit participants, collect data and eventually teach the women to use at-home devices to test for the human papilloma virus, which, left untreated, can lead to cervical cancer.
“We learned that the cultural barriers around Pap smear screening itself were significant,” remembered Kobetz, who is director of both the Miller School’s Jay Weiss Center for Social Medicine and Health Equity and the Sylvester Comprehensive Cancer Center’s Disparities and Community Outreach Core. “We had to devise ways to get around those barriers. This was a case where a free clinic alone was not the answer.”
Partnering with the Center for Haitian Studies, which became their community “home,” they applied for and received multiple grants, including a center grant from the National Cancer Institute for a randomized trial to evaluate whether the use of self-sampling tests would reduce the rate of cervical cancer.
Bastien notes that her organization’s collaboration with Kobetz was a signal that Kobetz could be trusted. The word “trust” is simple, she explained, “but so meaningful to a disenfranchised community.”
“Dr. Kobetz’s work is extremely important for the Haitian-American community,” Bastien said. “It gives women the tools to take control of their own health and their lives. They are trained to practice breast health by checking their breasts regularly and to self-administer cervical tests. Her team then follows up with test results and promptly intervenes when the need arises.”
Kobetz believes her own bout with thyroid cancer also helped the Haitian-American community accept her. Although she comes from privilege and can navigate the health care system with relative ease, her own illness indicated that she, too, was vulnerable to serious disease.
“In some ways, I think they felt bad for me,” said Kobetz, who reflects lightheartedly on the encounters. “I had this massive scar around my neck and when I would take off my scarf they would say, ‘What happened to you?’ Now, one of my goals is to do as much as I can to help them have the same kind of health care access I did.”
As the work in Little Haiti continues, it is serving as the framework for other programs. It has been adapted by Partners in Health in Haiti where that group built one of the first comprehensive community-based cervical cancer programs for rural Haitian women. And, under the leadership of Kobetz and Sonjia Kenya, Ed.D., M.S., M.A., assistant professor of family medicine and community health, the Jay Weiss Center is planning to replicate the participatory approach to research and enhancing services in Overtown.
“For me, the biggest success was that the Little Haiti community itself was taking on cervical cancer,” said Kobetz. “It has become a community effort. There is even a cervical cancer conference held every year.”
At the conference last November, Bastien’s organization surprised Kobetz with its Health Leadership Award for her invaluable contributions to the health and well-being of all citizens of South Florida, and her strong commitment to research, and her passion for community and women’s health.
“Her work helps to reduce health care costs,” said Bastien, “but, most importantly, it saves lives.”