“I Am Not Dead, But I Am Not Living:” Obstetric Fistula in Kenya

Human Rights Watch

The Kenyan state denies fistula sufferers their rights to the highest attainable standard of health and to a remedy for the injustices and denial of service that they face.

This article is an excerpt from a report by Human Rights Watch entitled I am Not Dead But I am Not Living. To truly understand the dimensions of the issue of obstetric fistula in one country of Africa, please read the full report.

The excerpt is part of a series by Rewire with contributions from  EngenderHealth, Guttmacher Institute, Human Rights Watch, the International Women’s Health Coalition, the Fistula Foundation, the United Nations Population Fund (UNFPA), and the Campaign to End Fistula

All articles in this series represent the views of individual authors and their organizations.  Articles in Part 2 can be found at this link, and all articles in the series can be found at this link.

From I am Not Dead But I am Not Living:

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[Fistula] is a condition that denied me the chance to enjoy my life as a young person. I was isolated and rejected. All my nights were nights of shedding tears due to genital sores. I carried the condition for 12 years without knowing that I could be treated here in Kenya…. I made several attempts to take my life and was admitted to [a] mental ward.… In May 2007 a successful surgery was done.… The closure of that hole is not all that these women need. After I was operated on, I was returned to the mental ward again. You realize, I am not dead, but I am not living.

—Amolo A., a Kenya woman who had a successful fistula repair and is a community educator on fistula, Nairobi, November 26, 2009

Medically fistula is caused by obstructed labor. But also there is obstructed transport, obstructed family planning, obstructed emergency care, obstructed rights.… Everything is obstructed.

—Dr. Khisa Wakasiaka, a reproductive health expert and fistula surgeon, Nairobi, November 11, 2009

Tens of thousands of women and girls around the world suffer every year from obstetric fistula, a preventable childbirth injury that results in urine and/or stool incontinence. Fistula causes infections, pain, and bad smell, and often triggers stigma and the breakdown of family, work, and community life.

The full global extent of this problem is not known. According to the World Health Organization, fistula strikes roughly 50,000 to 100,000 women and girls every year, mainly in resource poor countries in sub-Saharan Africa and Asia. In Kenya approximately 3,000 women and girls develop fistula every year, while the backlog of those living with untreated fistula is estimated to be between 30,000 and 300,000 cases. There are many doubts about these estimates because few studies have been conducted to establish the extent of this problem in the country. Fistula sufferers are mostly young women and girls with little education. They often come from remote and poor areas where infrastructure is underdeveloped and access to health care, particularly emergency obstetric care, is lacking.

A woman who develops fistula has already gone through the trauma of a long, painful obstructed labor. In most cases, the labor ends with a stillbirth. As the woman begins to recover from the grief and agony of the failed delivery, she discovers that her body is painfully damaged. She might think that she is suffering from temporary, somewhat normal incontinence. But then she begins to smell, her clothing and bedding are constantly wet, her thighs sting, and she might develop ulcers on her vagina. At first, the woman might try to hide her condition, but usually this is impossible. Sex is painful, and her marriage, as a result, might start to fray or even turn violent. She might be thrown out by her husband, her relatives and friends may think that she is bewitched or cursed. In all likelihood, she will stop working, going to market, and participating in social or religious life. She might live in pain and isolation for years, even decades, before learning that surgery could fix her condition. This news will not be enough for many the fistula survivors who lack the resources and autonomy to pursue surgery. For some, however, surgery provides a chance for a new life.

The Kenyan state violates the rights of fistula sufferers in multiple ways, by denying them their internationally-guaranteed access to the highest attainable standard of health, to health information critical to women’s and girls’ wellbeing, to their reproductive and maternal health, and to a remedy for the injustices and denial of service that they face. Kenya, as a party to numerous international and regional human rights instruments such as the International Covenant on Economic, Social and Cultural Rights (ICESCR), the Convention on the Elimination of All Forms of Discrimination against Women (CEDAW), and the African Charter on Human and Peoples’ Rights (African Charter), is obligated to act to rectify these violations and to eliminate the discrimination that both contributes to the disabling condition of fistula and results from it.

This report is based on field research conducted by Human Rights Watch in November and December 2009 in hospitals in Kisumu, Nairobi, Kisii, and Machakos as well as in Dadaab in March 2010. We interviewed 55 women and girls ranging in age from 14 to 73 years, 53 of whom had fistula. Of the 53 with fistula, twelve were girls aged 14-18 years. We also interviewed nine obstetric fistula surgeons, one anesthetist, three hospital administrators, and nine nurses working in hospital gynecology and labor wards, five of whom worked in fistula wards. We interviewed four secondary and four primary school teachers regarding sexuality education in schools. Further, we talked to nongovernmental organizations working on health and women’s rights, government officials, professional associations for doctors and nurses, international donors, United Nations representatives, and an elected councilor representing a ward in Machakos.

Reproductive and maternal health care are considered top development and human rights priorities. The UN Committee on Economic, Social and Cultural rights has identified the lowering of maternal mortality, and morbidity such as obstetric fistula, as a “major goal” for governments in meeting their human rights obligations. Under the Millennium Development Goals, governments have committed to improve maternal and reproductive health through a 75 per cent reduction in the maternal mortality ratio from 1990 levels, and achieving universal access to reproductive health by 2015.

The Kenya government has taken some positive steps to improve women’s and girls’ reproductive and maternal health. These initiatives include eliminating charges for public family planning services, antenatal and postnatal care, and prevention of mother-to-child HIV transmission. The government has also eliminated charges for delivery in dispensaries and health centers to encourage women to deliver in medical facilities with a skilled birth attendant. In addition, by introducing a system of full or partial fee waiver for access to government hospitals, the government has taken steps to increase access to health care for indigent patients. However, as this report shows through the voices of fistula survivors, many women and girls, particularly the poor, illiterate, and rural, are not fully enjoying the benefit of these policies, and there is urgent need to reevaluate and scale up many of the responses.

The report discusses five areas that require increased attention in order to improve maternal health care and reduce obstetric fistulas: access to family planning information and services, the provision of school-based sexuality education, access to emergency obstetric care including referral and transport systems, overcoming economic barriers to maternal health care services and fistula treatment, and health system accountability.

Women and girls need access to information to make informed choices about their sexual and reproductive lives. They also need information about access to services which help ensure a healthy pregnancy and delivery, and for treating obstetric complications such as fistula. Yet information on reproductive health, family planning, potential complications during pregnancy and childbirth, the advantages of facility deliveries, what fistula is, and the availability and cost of fistula treatment and maternity-related services are all lacking among many of the women and girls we interviewed, and even among some health providers.

For example, 20-year-old Kwamboka W. became pregnant at age 13 while in primary school, developed fistula, and lived with it for seven years before hearing on the radio about a United Nations Population Fund (UNFPA) funded fistula repair camp offering free surgeries. She told us, “I didn’t know anything about family planning or condoms. I just went once and got pregnant. I still have no idea about contraceptives.” Despite some government efforts to introduce sexuality education in upper primary and secondary schools, Kenya has not made it part of the official syllabus and as a result there is no time allocated within school hours to teach it.

In 2004, the government conducted a fistula needs assessment that showed lack of awareness about fistula in communities as a barrier to its prevention and treatment. Six years later, the government has not taken adequate steps to educate the population, nor to correct the myths that exist about fistula in many communities.

The Kenya government’s efforts to ensure affordable maternity care for poor rural women and girls have fallen far short of even its own goals. Upwards of three quarters of the women and girls interviewed by Human Rights Watch described economic constraints as a barrier to accessing maternal health services and fistula repair surgery. Almost all women and girls interviewed for this report told Human Rights Watch how difficult it was to raise the money needed for fistula surgery. To its credit, the government supports donor-funded fistula repair “camps”—consisting of short-term mobilization of women and girls, screening for obstetric fistula, and providing surgery for those affected—in district and provincial hospitals around the country several times a year. These camps offer free repair surgeries, but do not cover all associated costs. In addition, government hospitals offer exemptions and waivers for indigent patients, but these policies have been problematic in practice.

The health user fee waiver policy does not work for several reasons: lack of awareness of the policy among patients and some health providers, some facilities’ reluctance to publicize the waivers and deliberate withholding of information when requested by patients, and vague implementation guidelines, including the criteria for determining the financial needs of a patient. Many women and girls living with fistula are poor, but none we spoke to had received a waiver.

Women with obstructed labor, which can lead to fistula, need emergency obstetric care such as Cesarean sections. Inadequate access to emergency obstetric care, especially for poor and rural women, is a longstanding problem in Kenya. Kenyan government statistics have shown that capacity to manage complications during childbirth is weak in many health facilities, including referral facilities such as hospitals. Currently available statistics show that less than 10 percent of all medical facilities in the country are able to offer basic emergency obstetric care, and only 6 percent offer comprehensive emergency obstetric care.

Moreover, health facilities, especially in rural areas, are perpetually understaffed, further limiting timely assistance and referral when women develop obstetric complications. Many women with obstetric complications develop fistula and experience stillbirth simply because ambulances and fuel are lacking.

In order to correct systemic failures in reducing maternal deaths and obstetric fistula, it is important to get feedback from patients on the quality and acceptability of services provided. But accountability mechanisms, which should serve the purpose of identifying systemic problems in Kenya’s health system, are far from effective. There should be accessible ways of providing such feedback, lodging complaints, and ensuring such feedback is acted upon. Real accountability mechanisms would not only enhance trust in the health system but also improve utilization and success of maternal health services.

Most of the women Human Rights Watch interviewed did not know how, or to whom, they could complain about or challenge any of the above barriers. Nor did they have any faith that complaints would result in improved treatment. They were also afraid of retaliation by health staff if they complained. We found no indication that the government had taken any steps to enable illiterate patients to understand their rights and to lodge grievances.

While fistula surgery is increasingly available, the government and organizations providing repair surgeries have paid little attention to the long-term needs of women and girls for physical, emotional, psychological, and economic support after surgery. There are no formal initiatives by the government or other service providers to rehabilitate and reintegrate fistula survivors into families and communities. Fistula survivors have endured social and psychological torment that is unlikely to end with surgery. Women may continue to be stigmatized even after successful repair due to lack of fistula awareness in communities, and unsuccessful repairs can be traumatizing for women. Further, fistula places a heavy financial burden on survivors and their families, and as a result they may need support to become economically productive after repair.

The World Health Organization has developed important recommendations for clinical management of obstetric fistula, as well as program development to address issues of fistula prevention and rehabilitation. However, Kenya has not developed a national strategy to address fistula despite conducting a needs assessment in 2004. The WHO recommends that national strategies to address obstetric fistula be integrated into existing programs on safe motherhood and those to improve maternal and neonatal health generally, but Kenya is not adequately doing this.


This series is being published in conjunction with renewed efforts by advocates and the public health community to increase U.S. international support for efforts to address obstetric fistula, a wholly preventable but debilitating condition caused most immediately by obstructed labor and too early or too frequent childbearing, but generally rooted in lack of access to health care and discrimination against women.  Fistula affects the lives of individual women, their children and families, and also grossly undermines women’s economic productivity and participation in society. The global public health community has called for comprehensive strategies both to prevent new cases and treat existing cases of fistula.  Congresswoman Carolyn Maloney (D-NY) will soon introduce legislation intended to support a comprehensive U.S. approach to fistula as part of a broader commitment to reducing maternal mortality and morbidity worldwide.

News Politics

Anti-Choice Group Faces Fundraising Gap in ‘Topsy-Turvy Year’

Amy Littlefield

“I will tell you that this has been the toughest year we have faced since I’ve been executive director of National Right to Life—and I came here in 1984—for our political fundraising,” David O’Steen announced at the annual National Right to Life Convention Friday.

Less than two weeks after the Supreme Court dealt the anti-choice movement its most devastating blow in decades, one of the nation’s leading anti-choice groups gathered at an airport hotel in Virginia for its annual convention.

The 46th annual National Right to Life Convention arrived at what organizers acknowledged was an unusual political moment. Beyond the Supreme Court’s decision to strike down abortion restrictions in Texas, the anti-choice movement faces the likely nomination later this month of a Republican presidential candidate who once described himself as “very pro-choice.”

The mood felt lackluster as the three-day conference opened Thursday, amid signs many had opted not to trek to the hotel by Dulles airport, about an hour from Washington, D.C. With workshops ranging from “Pro-Life Concerns About Girl Scouts,” to “The Pro-Life Movement and Congress: 2016,” the conference seeks to educate anti-choice activists from across the United States.

While convention director Jacki Ragan said attendance numbers were about on par with past years, with between 1,000 and 1,100 registrants, the sessions were packed with empty chairs, and the highest number of audience members Rewire counted in any of the general sessions was 150. In the workshops, attendance ranged from as many as 50 people (at one especially popular panel featuring former abortion clinic workers) to as few as four.

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The attendance wasn’t the only sign of flagging enthusiasm.

“I will tell you that this has been the toughest year we have faced since I’ve been executive director of National Right to Life—and I came here in 1984—for our political fundraising,” National Right to Life Executive Director David O’Steen announced at Friday morning’s general session. “It’s been a topsy-turvy year. It’s been, for many people, a discouraging year. Many, many, many pro-life dollars, or dollars from people that would normally donate, were spent amongst 17 candidates in the Republican primary.”

O’Steen said the organization needed “$4 million that we do not have right now.”

When asked by Rewire to clarify details of the $4 million shortfall, O’Steen said, “You’re thinking this through more deeply than I have so far. Basically, the Right to Life movement, we will take the resources we have and we will use them as effectively as we can.”  

O’Steen said the organization wasn’t alone in its fundraising woes. “I think across many places, a lot of money was spent in these primaries,” he said. (An analysis by the Center for Public Integrity found presidential candidates and affiliated groups spent $1 billion on the presidential race through March alone, nearly two-thirds of it on the Republican primary. Anti-choice favorite Texas Sen. Ted Cruz (R) spent more than than $70 million, higher than any other Republican.)

The National Right to Life Board of Directors voted to back Cruz in the Republican presidential primaries back in April. It has not yet formally backed Donald Trump.

“I really don’t know if there will be a decision, what it will be,” National Right to Life Committee President Carol Tobias told Rewire. “Everything has [been] kind of crazy and up in the air this year, so we’re going to wait and kind of see everything that happens. It’s been a very unusual year all the way around.”

Some in the anti-choice movement have openly opposed Trump, including conservative pundit Guy Benson, who declared at Thursday’s opening session, “I’m not sure if we have someone who is actually pro-life in the presidential race.”

But many at the convention seemed ready to rally behind Trump, albeit half-heartedly. “Let’s put it this way: Some people don’t know whether they should even vote,” said the Rev. Frank Pavone, national director of Priests for Life. “Of course you should … the situation we have now is just a heightened version of what we face in any electoral choice, namely, you’re choosing between two people who, you know, you can have problems with both of them.”

Another issue on the minds of many attendees that received little mention throughout the conference was the Supreme Court’s recent ruling in Whole Woman’s Health v. Hellerstedt, which struck down provisions in Texas requiring abortion providers to have hospital admitting privileges and mandating clinics meet the standards of hospital-style surgery centers. The case did not challenge Texas’ 20-week abortion ban.

“We aren’t going to have any changes in our strategy,” Tobias told Rewire, outlining plans to continue to focus on provisions including 20-week bans and attempts to outlaw the common second-trimester abortion procedure of dilation and evacuation, which anti-choice advocates call “dismemberment” abortion.

But some conference attendees expressed skepticism about the lack of any new legal strategy.

“I haven’t heard any discussion at all yet about, in light of the recent Supreme Court decision, how that weighs in strategically, not just with this legislation, but all pro-life legislation in the future,” Sam Lee, of Campaign Life Missouri, said during a panel discussion on so-called dismemberment abortion. “There has not been that discussion this weekend and that’s probably one of my disappointments right now.”

The Supreme Court decision has highlighted differing strategies within the anti-choice community. Americans United for Life has pushed copycat provisions like the two that were struck down in Texas to require admitting privileges and surgery center standards under the guise of promoting women’s health. National Right to Life, on the other hand, says it’s focused on boilerplate legislation that “makes the baby visible,” in an attempt to appeal to Supreme Court Justice Anthony Kennedy, who cast a key vote to uphold a “partial-birth abortion” ban in 2007.

When asked by Rewire about the effect of the Texas Supreme Court case, James Bopp, general counsel for the National Right to Life Committee, appeared to criticize the AUL strategy in Texas. (Bopp is, among other things, the legal brain behind Citizens United, the Supreme Court decision that opened the floodgates for corporate spending on elections.)

“This case was somewhat extreme, in the sense that there were 40 abortion clinics—now this is just corresponding in time, not causation, this is a correlation—there were 40 abortion clinics and after the law, there were six,” Bopp said. “That’s kind of extreme.”

Speaking to an audience of about ten people during a workshop on campaign finance, Bopp said groups seeking to restrict abortion would need to work harder to solidify their evidence. “People will realize … as you pass things that you’re going to have to prove this in court so you better get your evidence together and get ready to present it, rather than just assuming that you don’t have to do that which was the assumption in Texas,” he said. “They changed that standard. It changed. So you’ve gotta prove it. Well, we’ll get ready to prove it.”

News Politics

Democrats in Utah, Colorado Make History as First Openly Transgender Women to Win Congressional Primaries

Ally Boguhn

Though Misty Snow's win may be historic for LGBTQ equality, she has previously noted that it was not the reason she is running for office."I'm not running because I'm transgender. I just happen to be transgender," the Utah candidate said.

Voters in Utah and Colorado made history Tuesday after nominating Democrats Misty Snow and Misty Plowright to run for Congress in their respective states—making them the first openly transgender women to win a major party’s congressional primary nomination.

Misty Snow, according to the bio listed on her campaign’s website, is a 30-year-old grocery store cashier from Salt Lake County, Utah, “concerned by the degree of income inequality in this country: particularly how it disproportionately impacts women, people of color, and the LGBT community.” Among the many issues prioritized on her website are paid maternity leave, a $15 minimum wage, and anti-choice regulations that “restrict a woman’s right to having a safe and legal abortion as well as any attempts to undermine a woman’s access to important health services.”

Though her win may be historic for LGBTQ equality, she has previously noted that it was not the reason she is running for office. “I’m not running because I’m transgender. I just happen to be transgender,” she told the Salt Lake Tribune in May. In later statement to the publication, however, Snow acknowledged that “a lot of people have told me whether I win or lose, I’m already making a difference just by running.”

Snow ran opposite Democrat Jonathan Swinton in Utah, having filed to run for office just before the March 17 deadline. Snow decided to run after Swinton, who was running for the Democratic ticket unopposed, penned an op-ed in September arguing that Planned Parenthood should be investigated—though the government should not be shut down over it. After reading the op-ed and thinking it over for several months, Snow told the Tribune she began to think the people of Colorado deserved a more liberal option and thought, “Why not me?”

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Snow’s win means she will move on to run against incumbent conservative Sen. Mike Lee. As previously reported by Rewire, Lee is stringently anti-abortion and has consistently pushed measures “attempting to limit access to or outright ban abortion.”

Misty Plowright, who is running to represent Colorado’s 5th congressional district, describes herself as an “Army veteran, a self-educated woman, a member of the LGBTQ+ community, and a passionate social democrat,” according to her campaign’s website. An IT worker from Colorado Springs, Plowright billed herself as the “anti-politician” during an interview with the Colorado Springs Gazette, and is running on a platform that includes campaign finance reform and defending voting rights.

Plowright will now challenge incumbent Rep. Doug Lamborn (R) for his seat in the House.

Plowright congratulated Snow in her win in a Wednesday post to her campaign’s Facebook page. “Congratulations from ‪#‎TeamMisty‬ to another progressive candidate in Utah, Misty K Snow,” wrote Plowright’s campaign. “Both women made history last night by winning their Democratic Primary.”

As Slate reported, though the candidates may have both won their primary races, “Snow and Plowright face uphill battles in the coming months”:

Despite a Gallup survey from March 2015 that calculated Salt Lake City’s LGBTQ population as the seventh-highest in the nation, Lee leads Snow 51 percent to 37 percent among likely general election voters according to a poll commissioned by the Salt Lake Tribune and the Hinckley Institute of Politics in early June. And Lamborn, who has represented Colorado’s heavily conservative fifth district since 2007, took nearly 60 percent of the vote in his most recent reelection fight.