Raising the profile of obstetric fistula

I have a soft spot for many things in life: cat videos on YouTube, quirky coffee shops and Pittsburgh Steelers paraphernalia, to name a few. In my work, I’ve also developed a soft spot for issues that are classified as “neglected” — the underdogs of global health.

Mercy Ships' Aberdeen Wet African Fistula Center

Mercy Ships’ Aberdeen Wet African Fistula Center in Sierra Leone
In my previous job, I focused on neglected tropical diseases (NTDs) — a set of diseases so unheard of that neglect is part of their name. While working on NTDs, we had many conversations about what it meant to be neglected. Was it rooted in a lack of public awareness or the lack of a celebrity advocate? Was there a lack of political will and funding? Was it unpleasant, and therefore unpleasant to talk about? Or was it a combination of factors acting as the invisible hand of the attention marketplace, elevating some issues to prominence while diminishing others?

We never came up with great answers, but the marching orders were clear. In order to end the neglect, we had to raise attention, understanding, political will, and money.

So it’s no surprise that when I first heard about obstetric fistula — arguably among the most neglected of health issues — I wanted to learn and do more. If you don’t know what fistulas are, you’re not in the minority; my blackberry didn’t even recognize the word “fistula” as I typed it, if that’s any indication, and it’s a topic very few people talk about.

A fistula is a hole in a woman’s birth canal caused by prolonged, obstructed labor, which isn’t relieved in a timely manner by a medical intervention. It’s most common in sub-Saharan Africa and Asia, in large part due to a lack of access to C-sections and other emergency obstetric care. Women with fistulas develop chronic incontinence — a polite way of saying that they cannot control when and where they urinate or defecate. These women are humiliated, and are ostracized in their communities.

The indignity of transforming from a proud, strong, expectant mother into an outcast suffering from intense physical and emotional pain is one of the most tragic things I can imagine. Participants on a ONE-led tour of Sierra Leone in 2010 learned about this injustice from women experiencing it first-hand as they toured the Aberdeen West Africa Fistula Center. Upon return from the trip, former White House Press Secretary Dana Perino reflected that she had “not been able to get it out of my mind since.”

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The Global Fistula Map
Fortunately, a surgery costing just $450 can correct fistulas and restore dignity for affected women. Innovative programs have sprung up across Africa and Asia to deliver these surgeries, and just this week, Direct Relief International, the Fistula Foundation, and United Nations Population Fund launched a new tool to showcase these efforts: the first-ever Global Fistula Map. The map is a great interactive resource, providing information about the issue, why fistulas occur in specific places, and where programs doing fistula repair are located. Gillian Slinger, the coordinator of the Campaign to End Fistula, explained that “documenting where treatment is available is critical to providing care, raising resources and restoring the health and dignity of women and girls living with fistula.”