As Crista Johnson-Agbakwu, MD, completed her training in obstetrics and gynecology, she became aware of a health care disparity addressed by few physicians—Somali, Sudanese, and other refugee or immigrant women often found it difficult to find desperately needed, culturally sensitive Ob-Gyn care in the United States, if they had undergone the traditional practice of female circumcision. As a result, the women often feared American doctors and had very high rates of pregnancy complications, infant death and maternal morbidity.
“Many women—especially Somali women—fear the health care system because they are concerned that they will receive cesarean sections when pregnant, for example, because they have learned that most American doctors do not know how to deliver a baby for a woman with a circumcision scar,” explains Johnson-Agbakwu, a 2005-2008 Robert Wood Johnson Foundation (RWJF) Clinical Scholar.
“They often avoid care until very late in pregnancy, which leads to very bad outcomes, including emergency C-sections and hemorrhaging. In their culture, they are accustomed to a natural birth, so they also tend to refuse induced labor, even if they are two or three weeks beyond their due date,” Johnson-Agbakwu says. In addition, for women who have experienced the most severe form of circumcision (a partial closing of the labia majora), chronic urinary tract infections and scar abscesses may develop requiring medical and/or surgical management. “In addition, due to concern about pain during intercourse, men are bringing their fiancés or wives to me to open the scar.”
It’s not that American physicians fail to treat them. “The problem is that there’s minimal if any formal training in medical schools and residency programs on how to counsel patients and manage the circumcision scar, so doctors may lean toward performing a C-section. In many cases, problems are also exacerbated by the lack of interpreters in many hospitals, leading to poor patient/provider communication,” Johnson-Agbakwu says.
A Misunderstood Practice
Female circumcision has become a political hot button in recent years. Just mentioning the ancient practice (evidence of circumcision has been found on female mummies in Egyptian tombs) can elicit complaints that it is sexist and cruel from Americans, Europeans and some African feminists. Practiced in approximately 28 countries, according to the World Health Organization, female circumcision is illegal in the United States, Canada and throughout Europe.
As an example of the recent controversy, in 2010, the American Academy of Pediatrics (AAP) issued a policy statement recommending that American pediatricians should be allowed to consider harm reduction strategies such as a small, ritual, genital nick on young girls, whose parents would otherwise have more extensive cutting done outside the United States. This was met with a global outcry by human rights activists, which led the AAP to later revoke the policy statement.
Yet, in the eyes of many people from Arabic or African countries or Muslim communities, objection to the practice is considered ethnocentric, if not downright racist.
In the middle of this debate are hundreds of thousands of women, who simply wish to honor the traditions passed down by their grandmothers and mothers, and are desperately in need of high-quality, medical care that is not shaped by the political debate of the day.
“Some of the African women are horrified and viscerally opposed to the practice, but some view it with extreme pride and honor,” Johnson-Agbakwu explains. “And then there are women who think of it as part of their beauty and want to protect the practice, and women who have opinions that fall everywhere in between—husbands as well. My own feelings and understanding of the issue have evolved as I’ve gotten to know these women better.”
Female circumcision is also a different procedure in different cultures. In most countries, there is only a moderate amount of cutting and the procedure is performed on girls between the ages of 5 and 10. “But about 98 percent of Somali women have undergone circumcision and Somalia has the highest rates of women who have experienced the most extreme form of cutting. This is often the source of recurrent infections, cysts and pregnancy complications,” Johnson-Agbakwu says.
“Once I became fully aware of this situation, I applied to become a Robert Wood Johnson Foundation Clinical Scholar to do community-based participatory research and learn more about how to help these women,” says Johnson-Agbakwu, who is a research assistant professor of obstetrics and gynecology at the University of Arizona College of Medicine in Phoenix and at the Southwest Interdisciplinary Research Center, College of Public Programs at Arizona State University. The Phoenix clinic that she founded—Refugee Women’s Health Clinic-Maricopa Integrated Health System—is the first of its kind in the country. The clinic serves more than 1,500 women from 31 countries who speak more than 26 languages.
To build trust and ensure effective communication, Johnson-Agbakwu uses interpreters and cultural health navigators and she checks her political or personal objections at the door. “You cannot be imperialistic. You have to work from inside the community. I meet these women wherever they are on this issue. I do not judge them and I work to make them feel validated, comfortable and that allows me to provide quality care.”
Her August 2011 article in The Female Patient, “Female Genital Cutting: Addressing the Issues of Culture and Ethics,” dealt with social issues, but also offered physicians clear instruction on how to treat circumcised patients. Her new research, to be published later in 2012, will look at the views of Somali men.
“I now teach medical students how to provide effective care, but I’m only one of two Ob-Gyns in the country providing this kind of comprehensive care and education for women affected by this practice. And, we are seeing results. We are seeing extremely low C-section rates now in our local clinic because our doctors know how to treat the women properly. In turn, word has spread in the community, so the women are coming in early in their pregnancies for care. We are also developing best practice models,” Johnson-Agbakwu says.
“Throughout my time as a Clinical Scholar and in the years that I’ve been doing this work, I’ve learned several valuable lessons. The first is that the key to success in bringing about effective change, is to work to build community partnerships. Building trust also means concentrating on the coordination and continuity of care offered to the community you are working in,” Johnson-Agbakwu says. “At the clinic, we hope to become a national model for this type of care. As for me, I think I have been given an extraordinary opportunity in being able to provide care for this vulnerable population.”
The Robert Wood Johnson Foundation Clinical Scholars program advances the development of physicians who are leaders in transforming health care through positions in academic medicine, public health and other roles. The program trains clinicians in the program development and research methods that will enable them to find solutions to the many challenges posed by the health care system, community health and health services research.