In a world where even feminine hygiene products are advertised using euphemistic blue liquid, it’s not difficult to see why obstetric fistula hasn’t received the attention it so desperately deserves.
A horrific birthing injury caused by prolonged, obstructed labor, it is a hole between the birth canal and the excretory system, caused when the vaginal wall is crushed against the bladder or the rectum by the – often stillborn – baby’s head.
If the description is discomfiting, the reality is worse: women with the condition not only suffer the psychological trauma of losing their child, but are also left incontinent and, unable to work or bear more children, are in most cases ostracized by their communities. They are, in effect, modern-day lepers.
A Disease of Inequity
Reliable figures are hard to come by, but the World Health Organisation (WHO) estimates that over two million women are living with obstetric fistula, with an additional 50,000 to 100,000 new cases each year. Virtually eradicated in developed countries, it is a condition that overwhelmingly affects women living in poverty in sub-Saharan Africa and Asia, who cannot access the education and medical services necessary to ensure a healthy pregnancy and birth.
“The classic fistula happens to a very young woman, an adolescent in fact, who doesn’t have access to care. She often starts labor in her house, away from any hospital setting, and then prolonged labor is diagnosed late. She’s brought sometimes to the facility, but very late in the process, and then if the fistula occurs, she is left alone. It is absolutely a disease of inequity,” said Dr. France Donnay, the founder of the U.N. Campaign to End Fistula and former senior program officer for maternal health at the Bill and Melinda Gates Foundation.
What’s behind fistula is a lack of sexual and reproductive rights for women. Operation Fistula, one of the few organizations to have collected data on the condition, found that the average fistula sufferer had had her first pregnancy within three years of her first menstruation. Her age at marriage was less than 18 years and her husband was at least five years older than her.
“There is a great need for access to information and education for poor families in order to delay the age of the first pregnancy, to bring those girls to schools, to let them grow properly physically and emotionally, and to delay the age at marriage and particularly the age of the first pregnancy,” said Dr. Donnay.
A Data-Based Approach
Disability-adjusted life years (DALY) – a standard health metric that allows comparisons of the burden of disease across conditions – demonstrates how hard it is to live with fistula. Rectovaginal fistula (an abnormal connection between the rectum and vagina) has a disability weight of 0.492. That’s up there with terminal cancer (0.508) and amputation of both legs without treatment (0.494). Vesicovaginal fistula (an abnormal tract extending between the bladder and the vagina) at 0.338, isn’t far behind. It’s a devastating effect for what is an entirely treatable condition.
For years, various efforts have been made to treat sufferers with limited success. But a landmark survey carried out by Direct Relief in 2012 revealed that more than 55 percent of treatment organizations were treating fewer than 50 women per year, and because of their small scale, they were beyond the reach of existing funding organizations.
To bridge this gap, Operation Fistula developed an innovative financing structure that granted pay-for-performance funds directly to surgeons who successfully treated patients.
So overwhelming were the outcomes of this pilot program – it treated four times more patients from October 2012 to October 2014, funding the treatment of 752 patients in four countries at a cost of just $190-$288 per surgery – that, after presenting it to the minister of health in Madagascar, which sees 2,000 new cases each year, Operation Fistula was granted a signed MOU (Memorandum of Understanding) in just two days. The post-pilot project is set to start this year.
“We realized that our interventions are alongside vaccinations as among the most cost-effective global health interventions possible,” Seth Cochran, Operation Fistula’s executive director, said. “Our program invests in people with lived experience who are closest to the problem. We arm them with evidence and resources to transform their systems. Change will only come when we focus on quality and allow the resourceful people delivering care to innovate.”
Operation Fistula has found that a focus on data is key. “Even when our pilot funding ended, some surgeons kept using our forms on their own,” Cochran said. “Administrators have cited performance data as the most sustainably impactful contribution because once people know how to do better, they won’t choose to do worse.”
Dr Sohier Elneil, a London-based consultant urogynecologist who authored the FIGO Global Competency-Based Fistula Surgery Training Manual, said that empowering local healthcare personnel is vitally important. “We had a major problem in the field with ‘fistula tourism,’” she said, referring to well-meaning North American and European surgeons, either self-funded or funded by charities, who would visit affected countries for a few weeks and attempt to carry out fistula repairs, often at considerable expense. “There was no point, when the in-house team of surgeons was not up-skilled, not supported, not funded, and they were the people living and working there all their lives. They were the people who should have been focused on from the outset.”
A more pragmatic approach is needed, said Mira Mehes, interim executive director at the G4 Alliance (The Global Alliance for Surgical, Obstetric, Trauma and Anesthesia Care), a body dedicated to building political priority for surgical care as part of the global development agenda.
“There is no way that we can train enough obstetricians and surgeons to meet the current need,” Mehes said. “But in the interim, we can really strengthen other providers who are working in the communities where the need is greatest.” She advocates for task-sharing or task-shifting, where lay and mid-level healthcare professionals such as midwives are trained to provide clinical tasks and procedures, such as cesarean sections.
Women Helping Women
It’s essential to be able to reach women who need treatment – often, they are not even aware that what they have is a medical condition that can be fixed. In Kenya, where it is estimated some 300,000 women are living with obstetric fistula, One By One, which created the Let’s End Fistula program, came up with a unique way of identifying potential patients.
“We recruited and trained a team of 30 regional representatives who are from rural communities throughout western Kenya,” said Carolyn Anderman, executive director of One By One. These women, who are mostly fistula survivors themselves, speak out at community events about the condition.
“Whether it’s at a market or a funeral or a sports event, they don’t miss an opportunity to talk about it,” Anderman said. “Every time they speak, people come to them who know someone they think has fistula, and that starts the process of connecting with that woman. It has been a taboo topic, but when the people doing the education and outreach are deeply motivated, they break through that barrier.”
Treating the Whole Women
Surgical intervention is just one part of fistula treatment. “One of the biggest issues we have is that people fixate on fixing the hole in fistula, but they forget to fix the whole of the woman,” Dr. Sohier Elneil said. “They don’t think about contraception, sexual function or her future childbearing ability.” She said she has come up against cultural taboos against discussing these topics in conservative societies; these are conversations that must not be shied away from if women’s needs are to be met.
Organizations working in the field call for a holistic approach to recovery that includes counseling, physical therapy, societal reintegration and support from survivor networks. One example from the Worldwide Fistula Fund (WFF) is a new study which will assess quality-of-life impacts for fistula survivors receiving training in literacy and numeracy as well as access to credit schemes, vocational skills training and microfinance opportunities.
Prevention Is the Best Cure
While all of the progress in healing women who suffer from fistula is encouraging, attacking the root cause of the condition is the only way to end it.
“Obstetric fistula in general tracks right along with maternal morbidity and mortality,” said Dr. Jeff Wilkinson, who works in Malawi with the Freedom from Fistula Foundation. “It’s almost guaranteed that as soon as we start making some headway with reduction of maternal morbidity and mortality from other causes, we will see fistula disappear.”