Bill & Melinda Gates Foundation

Reframing the Fistula Narrative: A Call to Action

May 22, 2013

On May 23, 2013 the world will be marking the first-ever International Day to End Obstetric Fistula, as recently designated by the United Nations General Assembly, organized by the UN's Campaign to End Fistula.

This year marks the 10th anniversary of the launching of the United Nations Campaign to End Fistula. If you have no idea what fistula is – let alone that there’s a UN-backed effort to quash it – you’re in good company.

Obstetric fistula is a horrific birthing injury. It affects around 2 million women in Africa and Asia. Exact numbers are hazy because the communities most affected are poor and rural, and because the stigma attached to it prevents sufferers from coming forward. These women cannot escape the wretched scent of urine that is their post-childbirth existence.

A fistula is the medical term for a hole. Women develop an obstetric fistula during prolonged obstructed labor: the baby’s head gets stuck against the pelvis, causing tissue death, and by the time the mother expels the stillborn child several days later (if she herself survives), the pressure has caused a hole to develop between the vagina and bladder or rectum (or both).

 But here’s what sets it apart: fistula is both preventable and curable. Let’s repeat that: we know how to prevent it, and we know how to fix it.

The lack of skilled birth attendants means this woman – often a young girl, in fact – is already alone with what is happening to her body during this complicated birthing experience. Now that she finds herself uncontrollably leaking urine, the explanations elude her. In fact, her community will often accuse her of being cursed or involved with witchcraft. Populations in Zimbabwe have been known to refer to fistula as the “urine curse.” Whatever the explanation, she will become the modern-day leper of her community, tossed out and left to fend for herself.

This is fistula.

So how is it that most people have never even heard of this pervasive and hellish global health menace?

In fact, the reasons form a sort of perfect storm. To begin with, it’s incredibly rare in the Western world. C-sections prevent prolonged or obstructed labor, and most women have access to medical facilities when it comes time to deliver. Fistula is also prone to getting the umbrella treatment – just one of a bevy of conditions that can more generally be referred to as “maternal health” and not given its own focus. And of course, many find it uncomfortable to discuss openly (vagina! smelly pee!) and the full definition is cumbersome and unwieldy (see the above, multi-sentence paragraph – fistula is resistant to a media-friendly sound bite).

But here’s what sets it apart: fistula is both preventable and curable. Let’s repeat that: we know how to prevent it, and we know how to fix it. Rarely in the public health world do we find a condition with so much hope built right in. We just have to seize it.

  

A tiny army of dedicated fistula combatants has made progress in the past decade, but not nearly enough. One obstacle is, of course, funding. Another is that the operation to repair a fistula can be performed only by specially trained surgeons, of whom numbers are limited.

But by far the biggest obstacle to the eradication of fistula is lack of awareness. We can’t expect to eliminate something if we haven’t even heard of it to know it needs eliminating. And 10 years into a concerted push to end fistula is a good moment to take stock of how we’ve approached awareness-raising and evaluate where those efforts have gotten us.

Thus, a mea culpa: we’re doing it all wrong. It’s time to change the conversation about fistula.

Enough with the weepy piano music. Enough tugging at the heartstrings with montages of sad-eyed, helpless women. Enough walking on eggshells about the specifics of the condition to spare the imagined discomfort of the public. Enough framing it as an issue only women should care about. For too long, we’ve been getting away with significantly underestimating the savvy of the donor community, the moxie of the women who are suffering, and our own capacity to tell the full story by reframing the fistula narrative. We’ve got to do better.

Traditionally, fundraising campaigns have been writing off exactly half the population: men. We’ve simply assumed they won’t connect with the subject matter. The conventional wisdom is that this is a women’s health issue, so we won’t even bother to say the word “fistula” in the male presence. Why ruffle feathers unnecessarily?

Settling for this POV is lazy and myopic. (And, men, this would be a great time for you to jump in and prove the donor relations experts wrong.) Every man has a mother. Many have sisters, girlfriends, wives. If you were born via C-section, put yourself on that day for a moment: if your mother had been in Gabon when she was giving birth to you and a C-section wasn’t an option, would she have lived? Would you? Would she have developed a fistula and spent the rest of her days as an outcast member of society, perpetually smelling of urine? Would you stand for it?

A related problem is the categorization of obstetric fistula as a facet of maternal health. This is factually correct. But a growing contention is that fistula would more accurately belong to the “neglected diseases” grouping, were it not for the pesky technicality that it is not a disease but an injury. Fistula is well aligned with dengue fever, guinea worm or Chagas disease, because, especially in comparison to the Big Three (AIDS, TB and malaria), they simply don’t get the attention or resources they warrant, and as a result are potentially fatal. For example, women with fistula are often so miserable that they severely limit their water intake in a futile attempt to lessen their urine output. They become weak and immobile, leading to internal organ and nerve damage. They even contemplate suicide – their lives are no longer in their control.

Finally, one of the most human reasons we don’t talk about fistula: it makes us blush. Sure, we could couch conversations in medical terminology to disguise the awkwardness of how the condition manifests, or we could use the innocuous “incontinence” term to keep everyone comfortable. But the fact is that to truly explain fistula, it’s gonna get a little messy. There’s nothing palatable about this bodily malfunction: it’s gross, it involves genitals, and it brings unbearable shame to those suffering from it. It is always going to be an uncomfortable conversation.

The thing is, it’s been shown time and again that when we do take the time to fully illustrate the depth of the problem, the galvanizing effect is immense. No one who hears of this fate is content to let it stand – especially when it doesn’t have to. It will take time for the systemic changes to happen, and they’re not for us to govern. To prevent fistula from occurring, foreign governments need to address policies on child marriage, access to health care, malnutrition, and a slew of contributing factors. But it is in our power to see that the hundreds of thousands of women who are currently living life in a pool of urine regain the world they knew before they tried to perform the everyday act of bringing a child into the world.

So on Thursday when the UN marks 10 years of working to end fistula, on Mom’s birthday when you’re expressing gratitude to the woman who gave you life, or on any random Tuesday when you read an article about a malnourished 16-year-old with two children in Zambia, say something about fistula. Help spread the word. Retweet something. Add it as a question at your local pub’s trivia night (and if you do, please tell us about it, because that would make you certifiably awesome).

Yes, a monetary donation is always appreciated. But right now what we need is awareness: $1 from 10 people is a sweeter victory than $10 from one person.

It’s a shame fistula is such a difficult subject around which to hold a conversation. But look at it this way: if it makes us uncomfortable just talking about it, imagine how it feels to live with it.

 
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