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US: Bill Offers Hope to Fistula Sufferers

Bill Promises Strategic Approach on Devastating Childbirth Injury

(Nairobi) - A bill introduced  in the US Congress on March 8, 2011, would help end the shame and pain of millions of fistula sufferers around the world, Human Rights Watch said today. Obstetric fistula is a devastating childbirth injury causing leakage of urine and feces from the vagina that largely afflicts poor, rural, and illiterate women in developing countries who lack access to emergency care or money for repair surgery.

The Obstetric Fistula Prevention, Treatment, Hope, and Dignity Restoration Act of 2011 would require the US government to provide comprehensive assistance to prevent and treat fistula. The World Health Organization estimates that 2 million women and girls are living with untreated fistula and between 50,000 and 100,000 are affected each year, mainly in sub-Saharan Africa and Asia. Fistula sufferers are often ostracized and live in pain if they have no access to surgery to repair the problem.  

"Giving birth should not mean living death," said Agnes Odhiambo, Africa women's rights researcher at Human Rights Watch. "Fistula is preventable and treatable."

The proposed law, sponsored by Rep. Carolyn Maloney, Democrat of New York, would require the US government to address a key gap in current efforts to reduce fistula: preventing the injury in the first place. This would be achieved through support to programs that help women get skilled care during pregnancy and childbirth, and after delivery. It also would require the US government to support programs that would address the underlying social and economic contributors to obstetric fistula, such as early marriage and a lack of access to education for girls, since adolescents are more prone to developing fistula.

The bill would also provide support for fistula repair surgery. Current programs to address fistula largely focus on treatment, but much more needs to be done to reduce the enormous backlog of women needing repair surgery. The bill authorizes financial support for training fistula surgeons, including "south-to-south" training and learning.

Reintegration and rehabilitation programs to help women return to full and productive lives are also central to the bill. These elements are largely absent from existing programs, Human Rights Watch said.

An important element of the bill is its strategic and sustainable approach to reducing fistula, Human Rights Watch said. It requires the US government to promote coordination among donors, multilateral institutions, the private sector, nongovernmental and civil society organizations, and government. It emphasizes building local capacity and improving national health systems. While some programs, including UN-sponsored programs, have invested in local capacity to address fistula, other initiatives have sent foreign surgeons for short visits to areas where many women need fistula surgery, leaving local health systems inadequately equipped to deal with fistula on a routine basis. 

"Fistula can only be conquered with investments in local expertise and health systems," Odhiambo said. "This bill marks an important shift away from treating fistula like a charity case and into seeing it as an integral part of maternal health care."

Human Rights Watch interviewed 55 fistula survivors in Kenya in 2009 and 2010, documenting the devastating impact of fistula on women's lives, as well as the barriers to prevention and treatment. Fistula leads to frequent infections, painful genital ulcers, a fetid odor, infertility, and nerve damage. Fistula triggers stigma and violence, both within families and communities. It places a huge financial burden on already poor families, and reduces their ability to farm or carry out other income-generating activities.

Obstetric fistula can be prevented by timely access to emergency obstetric care and the presence of skilled attendants during pregnancy and childbirth. Family planning information and services also play a key role, including through sexuality education in schools. These services are weak in many resource-poor countries, including Kenya.

Women told Human Rights Watch that they had lived with untreated fistula for years because they did not know that it is treatable, and many lacked money for treatment. In addition, there are few competent fistula surgeons or facilities doing routine fistula surgery.

"Fistula strips women of their dignity, and makes them outcasts in their own families and communities," Odhiambo said. "This bill holds so much promise to end the suffering of these women, and we urge the US Congress to take a stand for them."


Selected Testimony from Fistula Survivors Interviewed by Human Rights Watch

"I thought I should kill myself. You can't walk with people. They laugh at you. You can't travel, you are constantly in pain. It is so uncomfortable when you sleep. You go near people and they say urine smells and they are looking directly at you and talking in low tones; it hurt so much I thought I should die. You can't work because you are in pain; you are always wet and washing clothes. Your work is just washing pieces of rags. It is difficult to walk. You feel like your thighs are on fire. You cannot eat comfortably because you fear the urine will be too much. I cannot get into a relationship with a man because I feel embarrassed because I have so much urine coming out. My mother tells me, ‘you can't get married; how can you go to someone's home when you are like this? They will despise you.' I pity myself so much. My biggest fear is that I may never get a child. I look at my age-mates who are married with children and I feel so worthless."

- Kwamboka W. (pseudonym), November 27, 2009 

"My husband chased me away when I got this problem [fistula]. He used to beat me a lot. When I went back to my parents, my sister-in-law also became abusive saying she did not want a dirty smelly person in the home. I left, went to a nearby town, and rented a house. I started doing causal jobs like washing clothes and fetching water, but whenever it was discovered that I had a problem of [controlling] urine, I was chased away. Before long, everybody knew about my problem and I stopped getting work. I used to lock myself in the house and cry the whole night, and sleep hungry."

- Nyaboke H. (pseudonym), November 10, 2009

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