U.S. Healthcare Is Failing Survivors of Female Genital Cutting

Female genital mutilation/cutting (FGM/C), a painful procedure that excises external female genital organs, is considered a rite of passage in a number of African and Asian countries, and is now present in the West owing to rising global migration. FGM/C, which has no health benefits, involves the cutting of any part of the female genitalia including the clitoris and labia. 

According to a 2023 report published by the AHA Foundation, 421,000 women and girls are impacted by FGM/C in the U.S. alone. Of these, 385,000 women and girls are living with FGM/C and 36,000 girls are considered to be at risk of FGM/C—meaning that they are at risk of being cut domestically or being taken to their country of origin to be cut (also known as vacation cutting). Despite this rapid rise in the U.S. of populations affected by FGM/C, the healthcare of those affected has largely been ignored. 

And things have only gotten worse, thanks to one of President Trump’s executive orders, which has conflated a serious human rights violation (FGM/C), with gender-affirming surgery, which is a consensual medical procedure. This conflation is deliberate as it is part of the administration’s campaign to eradicate trans people. This executive order insinuates that gender-affirming medical care is provided without consent, which it is not; genital mutilation, on the other hand, is most certainly done without consent. 

This executive order also misinforms the public by referring to gender-affirming surgery as “chemical and surgical genital mutilation” of children that causes “lifelong medical complications, a losing war with their own bodies” — which does describe the effects of genital mutilation and cutting. Women affected by genital mutilation/cutting suffer lifelong consequences of a procedure that they’ve undergone as children, and which is not only done without consent — but without anesthesia. Medical complications often include hemorrhage, infection, menstrual difficulties, chronic pain, UTIs, cysts, prolonged labor, sepsis, sexual dysfunction, depression, and anxiety.

“Survivors are facing a lack of proper medical care as a result of healthcare providers not having adequate training about FGM/C,” explains Caitlin LeMay, executive director of EndFGM U.S. LeMay says survivors find themselves having to educate doctors about FGM/C during their appointments, which results in uncomfortable conversations or avoidance of medical visits altogether. A 2019 paper outlines the need for improved training, better assessments of clinicians’ knowledge of FGM/C, and the creation of standardized questionnaires that healthcare providers can use to assess patients with FGM/C. Of utmost importance is for any type of care to be culturally sensitive. The World Health Organization has also recently updated their clinical guidelines to management of health complications from FGM/C.

Karen McDonnell, associate professor at George Washington University’s Milken School of Public Health, describes the experience of a woman giving birth in the U.S. “She ended up hemorrhaging and nearly lost her life because … they didn’t know how to treat her,” she says. While this medical encounter is not uncommon following the overturning of Roe v. Wade in 2022, this has been a decades-long reality for many women with FGM/C, who make the U.S. their home.

Insurance coverage in the U.S. for procedures relating to FGM/C is also severely lacking. Deinfibulation and clitoral restoration are medical procedures used to correct the four types of FGM/C as classified by the World Health Organization. Deinfibulation helps reverse the type of FGM/C that sews the labia shut in an extremely painful way and leaves only a tiny hole for passing urine. This procedure helps manage pain and reduces complications during childbirth. Clitoral restoration reverses the remaining types of FGM/C which harm the clitoris. 

Yet, there is no insurance coverage for clitoral restoration, as many surgeons have come to discover, like Marci Bowers. Bowers, a California-based leading surgeon for procedures to correct FGM/C, considers both deinfibulation and clitorial restoration to be important: Deinfibulation helps with physical ailments caused by FGM/C. And clitoral restoration boosts mental health by helping women feel in control of their sexuality. But she has had little success billing insurance companies for any kind of FGM/C surgery, especially clitoral restoration, which is a procedure many women seek. “There is some Medicaid coverage for deinfibulation, but not for the clitoral restoration,” says Bowers.

When contacted by DAME Magazine, California’s Department of Healthcare Services confirmed that MediCal, the state’s Medicaid, covers medically necessary procedures relating to FGM/C that fall under two CPT codes, both of which cover deinfibulation, but not clitoral restoration. 

One reason for the lack of insurance might have to do with asking patients to return for their follow-up post-surgery, which can be difficult, resulting in a lack of sufficient data, says Bowers. Yet, “there’s a lot of things that don’t have adequate data but are still covered by insurance,” says Bowers. 

Another reason, explains Angela Peabody, executive director of the Global Women Peace Foundation (GWPF), is that the U.S. government considers clitoral restoration surgery cosmetic and does not believe it is necessary. But, as Peabody explains, this is incorrect because the surgery “restores what was removed when they were little girls.” 

Bowers says that some surgeons will do a cosmetic repair but at a lofty price. But a cosmetic repair isn’t the same as a true clitoral restoration — also known as the Foldes technique, named after the pioneering French surgeon Pierre Foldes — which specifically addresses sensory function and blood supply of the remaining clitoris.

The GWPF is an American organization that raises money to sponsor the surgery for women who want it. They currently have 20 women on their waiting list in the U.S. alone and, because they rely on funds raised through their annual 5K Walk to End FGM, are only able to take up to two women off their waiting list per year. “The surgery is in demand,” says Peabody. She recalls seeing around 30 women in the waiting room during a visit to Foldes’s clinic in Paris. Bowers sees 60 to 70 patients each year for this surgery. GWPF partners with Bowers and Foldes to provide the surgery. While neither surgeon charges for the surgery itself, there is still the cost of anesthesia as well as lodging, meals, and transportation that survivors usually pay out of pocket, amounting to around $2,000 in the U.S. and more for women who are able to travel to Paris. 

A lack of standardized training for American healthcare providers and a lack of insurance coverage for procedures that women with FGM/C want is isolating a growing population of women with specific healthcare needs. While George Washington University has developed a toolkit to aid healthcare providers in their assessment of FGM/C survivors, a standardized system is needed to address the unique healthcare needs of survivors of FGM/C. 

Yet, despite the lack of institutional support, women often make the discovery themselves of having been put through an oppressive practice, thereby kickstarting their journey to healing and being a voice for change. 

UPDATED POST: We spoke with one survivor whose story was initially included but has since been removed at her request. This story was published with the assistance of the Journalism & Women Symposium (JAWS) Health Journalism Fellowship, supported by The Commonwealth Fund.