This article is part of a series by Rewire with contributions from EngenderHealth, Guttmacher Institute, 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 and can be found at this link.
The 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.
After decades of taking a backseat to other more visible global health problems, the issue of maternal health has finally captured the attention of the world’s policymakers. In 2000, 189 countries adopted eight Millennium Development Goals (MDGs) designed to reduce global poverty and support development. MDG 5 called for improving maternal health, and includes the specific targets of reducing the maternal mortality ratio by three-fourths and achieving universal access to reproductive health by 2015. At the 2010 G-8 Summit in Canada, leaders of the richest countries promised to prioritize investments in maternal, newborn and child health, pledging $5 billion over the next five years to these efforts, while private foundations and non-G-8 countries pledged another $2.3 billion. The United Nations (UN) Secretary-General highlighted his desire to raise the profile of MDG 5, by launching a global strategy to accelerate progress on maternal and child health. And the Obama administration has included maternal and child health as a key pillar in its Global Health Initiative.
Although increased international attention as well as recent data showing some progress in lowering rates of maternal mortality are both welcomed by those concerned with public health and human rights, rates of pregnancy-related deaths remain unacceptably high and the world remains far behind in meeting the MDG 5 targets. To achieve this goal, governments must not only keep their funding promises, but ensure that funds are spent in the most effective ways possible to both prevent the causes of maternal illness and death and to offer accessible and effective care and treatment when complications do arise.
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Federesi’s story of surviving fistula in Uganda. Video courtesy of Engender Health and USAID.
Within the field of maternal health, moreover, there are specific pregnancy-related disabilities that themselves have been particularly neglected. Prominent among these is obstetric fistula, a-long ignored problem now finally garnering some well-deserved awareness. Obstetric fistula is caused by prolonged, obstructed labor without access to emergency obstetric care, leaving a hole, otherwise known as a fistula, between a woman’s vagina and her bladder or rectum, or both. Without surgical intervention, women with fistula live with urinary or fecal incontinence, and invariably face shame, stigma and despair.
Understanding the Problem
Although there is widespread agreement that the existing data are incomplete and likely underestimate the problem, according to the World Health Organization (WHO), there are at least two million women worldwide who have obstetric fistula. Another estimated 50,000 to 100,000 new cases of fistula occur each year, though some say the incidence is higher.
There may be no more heart-wrenching portrait than a girl or a woman enduring obstetric fistula. She is typically young, often as young as 13. She is usually from a poor family in a poor community in a poor country, probably in Sub-Saharan Africa or South Asia, because obstetric fistula has almost disappeared from the developed world. She may have a weak, stunted or undeveloped pelvis, due perhaps to malnutrition, childhood illness or just being too young to bear children. Often married while barely in her teens, she does not or is not allowed to practice contraception and becomes pregnant, perhaps frequently. During prolonged, obstructed labor, her fetus is too large to pass through the birth canal, and pushes against the tissues of her vagina, bladder and rectum for days, which leads to a fistula. Access to emergency obstetric intervention, in particular a cesarean section, could prevent a fistula from occurring, but is generally unavailable.
Most of the time, such a woman delivers a stillborn baby. If she herself survives the labor, which can last up to a week, fistula causes an involuntary leaking of urine or feces, which is horrifying to her and those around her. The physical effects can include a strong stench, bladder or kidney infection, infertility, painful ulcerations, and nerve damage and paralysis in the legs. The overpowering smell and her physical condition often lead to divorce, abandonment by her family and ostracism from her community. A woman with fistula may have little or no access to resources to get appropriate physical and mental health care or to economic opportunities to earn a livelihood, pushing her further into poverty and depression, and sometimes suicide. A woman may live with this condition for the rest of her life, if unable to access treatment. The physical, psychological, social and economic consequences are utterly debilitating.
Today I am 30 years old. I was 14 when everything turned upside down: my father arranged my marriage, and less than one year later, I was struck down by this terrible and humiliating sickness: urine leakage.
This happened after one week of prolonged and difficult labor. Yes, I spent seven days laboring in the hands of my poor mother and the village women, battling for my life and battling to give birth. But I could not.
On the seventh day, my husband took me from the village to the nearest health center, located 40 km away, where an unqualified health provider pulled the baby out by force. He was dead. The following day, my ordeal started: I could not control my bladder any more.
Courtesy of Engender Health and USAID
The Three Prongs
There is widespread consensus among fistula experts that a comprehensive approach to addressing the problem encompasses three prongs: prevention, treatment and rehabilitation. As with many other global health issues, however, prevention may be key to solving the problem, but it is often the most difficult area in which to make progress and demonstrate success.
In the case of obstetric fistula, prevention means providing universal access to adequate reproductive and maternal health care, as well as addressing the underlying systemic conditions that lead to the condition. At the most proximate—or direct–level, prevention measures include the availability of skilled birth attendants and emergency obstetric care, including access to a cesarean section. Another essential prevention strategy, however, is access to family planning services that enable women to avoid too-early pregnancies, have only as many pregnancies as they want, and space them to maximize their own health during pregnancy and the health of their babies.
Equally important to fistula prevention are interventions to combat the other, often interlocking, social and economic inequities that contribute to this problem: the low status of women, lack of education for girls, early marriage and pregnancy, malnutrition, poverty, inadequate health and transportation infrastructure and harmful traditional practices such as female genital mutilation. Failure to aggressively take on these persistent, root causes of fistula—and indeed of most other poor maternal health outcomes—will only ensure that the problem endures.
Treatment for obstetric fistula usually consists of surgical repair. There are many different forms of fistula, from the simple to the complex. Some 90 percent of uncomplicated cases can be successfully repaired; the average cost of fistula treatment, however, is about $300. For complex cases, repair may not be possible at all, but if it is, incontinence may continue regardless. Some fistulas can be extremely complicated, involving damage to other bodily systems and requiring multiple, expensive surgeries to treat. A holistic model of treatment also requires attention to infrastructure and local capacity, including the training of indigenous health professionals, provision of postoperative care, and equipping and upgrading health facilities.
Moreover, surgical repair of fistula is often only the first step for women to heal from this condition. Years and sometimes decades of living with fistula leave many women socially, psychologically and financially unable to function in their communities. Accordingly, the last prong of a comprehensive approach to fistula includes services that help fistula patients reintegrate into society through the provision of counseling, skills training, literacy classes and other support, to restore their dignity, self-confidence and self-sufficiency.
A variety of contingencies can arise even after a repair, including later complications, subsequent pregnancies (if possible) that require cesarean section, or recurrent fistulas (which can reoccur even with prior uncomplicated cases). Because of these factors and the devastation to women affected and those around them, it is crucial that prevention efforts be strengthened and emphasized in tandem with those around treatment and repair. Moreover, because obstetric fistula shares the same underlying causes that lead to other types of maternal morbidity, and to maternal and newborn deaths, it is not surprising that WHO and other leading global health professionals recommend that fistula prevention and treatment programs be integrated into a country’s overall plan to lower maternal and infant deaths. By pursuing a coordinated approach, fistula programs themselves will be stronger, more effective and more sustainable, along with the broader safe motherhood initiatives in which they are located.
Ongoing Fistula Initiatives
International aid efforts to tackle fistula have gained steam over the last few years. The global development agency that has led the charge against obstetric fistula is the United Nations Population Fund (UNFPA), which founded the first global campaign around fistula in 2003. The Campaign to End Fistula has embraced a comprehensive framework to eliminate fistula and assists countries in conducting assessment surveys, developing national plans and implementing those plans through interventions to prevent and treat fistula, and to provide reintegration services. It is working in 49 countries, and UNFPA has raised $37 million to support the campaign (see map). Additionally, UNFPA acts as Secretariat for the International Obstetric Fistula Working Group, which coordinates activities to eliminate fistula and whose membership includes leading individuals and organizations dedicated to fistula prevention, treatment and recovery.
The UNFPA-led campaign is active primarily in Africa and South Asia.
The U.S. government’s financial and technical contribution to international fistula efforts is carried out through the U.S. Agency for International Development’s (USAID) maternal health program as well as its population and reproductive health program. USAID’s FY 2010 allocation for fistula is more than $11 million, and the agency has programmed $59 million since it began implementation in 2005. It currently provides assistance to 34 fistula repair centers in 11 countries, as well as an additional 39 facilities for prevention services such as family planning and maternity care. The bulk of USAID fistula funding is funneled through the Fistula Care Project, a five-year cooperative agreement with EngenderHealth, a nongovernmental organization working on reproductive health. The project implements the majority of USAID’s prevention and repair programs, and manages the data for all of USAID’s fistula programs. In addition, USAID is a member of the Campaign to End Fistula, as well as of the International Obstetric Fistula Working Group.
Because fistula generates such deep sympathy, a diversity of actors in the advocacy, media and policy communities—including those who sit at opposite poles of the political spectrum—have taken an interest in it. One consequence of this broad-based acknowledgment of the problem, however, is the ideological divide that often forms over how to address a problem so intricately linked to sex and reproduction.
As happened with HIV in the context of the President’s Emergency Plan for AIDS Relief (PEPFAR), fault lines have already developed over the level of emphasis that should be placed on efforts to prevent fistula, which would include family planning, versus less ideologically-fraught treatment efforts. Experts in the field overwhelmingly agree that as advocates and policymakers consider efforts to develop new initiatives on obstetric fistula, it is imperative that such policies be grounded in an evidence-based, which is to say comprehensive, approach.
In Congress, interest in fistula spans the ideological spectrum. Congresswoman Carolyn Maloney (D-NY), a staunch ally of reproductive rights who has a long record of supporting fistula programs, is expected to reintroduce a bill this spring that emphasizes both prevention—including access to sexual and reproductive health services—and treatment, along with activities that build country capacity, such as promoting “south-to-south” training from one developing country to another.
Socially conservative legislators also have taken action on this issue. Rep. Chris Smith (R-NJ), a vehement opponent of comprehensive sexual and reproductive health services, has long promoted obstetric fistula programs. His philosophical approach was apparent during consideration of the FY 2006–2007 State Department reauthorization bill, to which he added funding for fistula repair activities, yet also successfully introduced an amendment that weakened language on fistula prevention and removed reference to contraceptive services.
Given the current political climate, the new Republican majority in the House, and the anti–family planning stance of many socially conservative lawmakers, advocates for eliminating obstetric fistula worry that a strong commitment to fistula prevention, particularly with regard to family planning, could be dropped in any legislative effort that seeks to attract broad bipartisan support and conservative evangelical participation.
Their concerns stem from the experiences of advocates during the original PEPFAR authorization process in 2003, as well as the reauthorization process in 2008, in which the price paid for holding together a coalition that included religious and social conservatives was steep. Both times, evidence-based prevention policies were sacrificed in favor of abstinence promotion, devaluation of prevention efforts generally, and a failure to recognize the value of better integration between contraceptive services programs and HIV prevention and treatment programs.
With respect to maternal health policies, the MDG framework clearly sets forth the importance of universal access to reproductive health care to the achievement of better maternal health. This interrelationship has been repeatedly affirmed by evidence, and supported by key implementers and donors alike. As the recent G-8 declaration stated, many pregnancy-related deaths and injuries could be prevented with “better access to strengthened health systems, and sexual and reproductive health care and services, including voluntary family planning.” With specific regard to fistula, the 2008 report of the UN Secretary-General on “Supporting Efforts to End Obstetric Fistula” states that “optimal maternal health, including elimination of obstetric fistula, will ultimately be achieved through universal access to reproductive health.”
Policies and programs to eradicate obstetric fistula cannot succeed without a robust family planning component. Sexual and reproductive health advocates working on fistula are therefore anxiously monitoring the development of fistula legislation and policy in this Congress. As the process moves forward, they are determined to ensure that, this time, comprehensive and evidence-based policies are not sacrificed to accommodate an ideologically diverse constituency. Even as advocates continue, years later, an uphill battle to repair some of the shortcomings of PEPFAR, the lesson and their message to policymakers has become clear: Do it right the first time, so you don’t have to fix it later.