Addressing Obstetric Fistula: Towards a Just and Healthy Life for All

Kelly Castagnaro

It's been said that in an unequal world, women are the most unequal among equals.  Obstetric fistula is a living example of this statement.

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.

It has been said that in an unequal world, women are the most unequal among equals.  Obstetric fistula—a condition driven by a range of inequities in access to basic health services, nutrition, education and other basic elements— is a living example of this statement.

Obstetric fistula is a tear or hole in the birth canal through to the urinary tract and/or rectum and caused by obstructed labor; left untreated, women become incontinent and may uncontrollably leak urine and feces.  With more than two million women living with obstetric fistula and between 50,000 to 100,000 new cases each year, we must do more collectively to prevent and treat this condition.

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This requires a focus on the human rights dimensions of public health problems. 

Rose’s story of surviving fistula in Uganda. Video courtesy of Engender Health and USAID.

Whether by choice, persuasion or coercion, many girls in the developing world have had sex before their 15th birthdays, often without adequate information or protection from unintended pregnancy or sexually transmitted infections (STIs), including HIV. For example, an estimated 60 million women between the ages of 20 and 24 in developing countries were married before 18.  The Population Council estimates that this number will increase by 100 million over the next decade if current trends continue.

For girls, sexual initiation is more likely to occur in the context of sexual violence and forced marriage, both of which place them at high risk of pregnancy, and STIs, including  HIV.  In Ethiopia, for example, nearly 70 percent of young married girls are forced to have sex before they have begun to menstruate. Because their bodies are not fully developed and ready to bear children, these young girls are at high risk for injury and death during pregnancy and childbirth. In fact, complications from pregnancy and childbirth are the leading causes of death among girls between the ages of 15 and19 in the developing world.

Various factors are at the root of these grim statistics.  Social norms that de-value girls and put a premium on the value of women as child bearers contribute to early marriage and sexual initiation. At the same time, huge disparities exist in access to health care and in health outcomes between women in high- and low-income countries, and between the rich and poor within most countries.  In low-income countries, by far the bulk of those in need are poor women and their very young children.  One-third of illness and death among women of reproductive age in these countries is caused by severe shortages in reproductive health services, basic services many of us in the United States take for granted:  contraception, safe abortion, skilled birth attendants, emergency obstetric care, and diagnosis and treatment of sexually transmitted infections (STIs) including HIV.

Yesmin’s Story

When Yesmin was 12 years old, her parents found a good man for her to marry. They were poor, and they thought that it would be best for their firstborn daughter to marry early. Yesmin and her husband discussed that it would be best to wait a bit and let pregnancy happen later, but neither one knew about any family planning method. Yesmin became pregnant after one month of marriage.

Yesmin faithfully attended antenatal care. One Friday night, she began to labor. On Saturday night, her husband, mother, and father took her to the government health center. She was advised to go to the district-level medical college hospital, and her father paid the cost of the ambulance Sunday morning. On Sunday evening, health workers requested a bag of blood, and Yesmin’s husband donated. The blood was given to Yesmin at the time she was delivering-and at that point, Yesmin lost consciousness. Yesmin spent nine days unconscious and catheterized in the hospital. When she awoke, she learned that the baby had been stillborn. Although the doctor encouraged Yesmin to remain in the hospital, her father had already spent his savings on her care. Her husband wanted to take her home, and at his request a hospital cleaner pulled out Yesmin’s catheter.

Yesmin was fine on the day-long journey home, but that night she discovered that she was leaking urine, even though she had no urge to urinate.

Read the rest of Yesmin’s story…

Courtesy of Engender Health and USAID

These conditions are compounded by the failure to provide comprehensive sexuality education and health services for the largest generation ever of young people.  One-third of the world’s population today is 19 years of age or younger, most of them in low- and middle-income countries where schooling, employment, and health care remain largely inaccessible.

Helping girls develop the skills and self-esteem to control their sexual lives and to marry and have children only if and when they are ready is but one part of the comprehensive package of health services and human rights protections women and girls need. 

To address these needs, women’s groups throughout Africa, Asia, and Latin America have designed and implemented comprehensive sexuality education programs that reach hundreds of thousands of young people with information and skills to protect their rights and health, with the intention of reducing death and illness related from sexual and reproductive causes. 

For example, in Nigeria, it is estimated that as many as one million women live with obstetric fistula, the majority of whom suffer from the condition from a young age.   Local organizations throughout the country are working to educate girls on their rights, how to prevent unwanted pregnancies, and how to resist early and forced marriage.  For example, IWHC’s longtime partner Girls’ Power Initiative in Nigeria reaches approximately 20,000 youth with programs that arm them with information about their rights, their bodies, and their responsibilities, as well as with life management skills.  GPI helps young girls take a stand against harmful practices such as female genital mutilation and child marriage, and to recognize the warning signs of complications in pregnancy.    

U.S. foreign assistance policies and programs can give a powerful boost to the burgeoning support for comprehensive reproductive health services, while also investing in very weak health service delivery systems common in Asia, Africa and Latin America. Similarly, local organizations led by women and young people that know the realities of women’s lives, can advocate effectively and hold their governments accountable, must also be supported and should be present at every policy table. 

In May 2009, President Obama announced a $63 billion, six-year Global Health Initiative, stating that we can no longer “confront individual preventable illnesses in isolation.”  The core principles underpinning the Global Health Initiative mirror IWHC’s vision and that of its partners worldwide: a woman-and-girl focused model of care centered on the realities and needs of local communities. 

This approach, and a strong funding commitment, can go a long way in its own right, and also will leverage significant support from other government donors and multilateral partners.  The United Nations Population Fund’s Campaign to End Fistula, which is already doing tremendous work on preventing and treating fistula, and the US Agency for International Development are key partners.

At this pivotal point of defining concrete actions to transform rhetoric into action investments in sexual and reproductive health services and rights, governments, the United Nations, and donors should take three priority actions:     

  1. Provide services for women at each stage of their lives, prioritizing women’s sexual and reproductive health.  This means increasing funding for an integrated package of services: contraception; safe abortion, where permitted by law; maternity care; and diagnosis and treatment of sexually transmitted infections, including HIV, buttressed by human rights protections and comprehensive sexuality education programs.
  2. Remove fees for services so that women and young people with limited resources can access services in a timely manner. 
  3. Ensure the full and equal participation of women and young people in all decision making processes

Securing women and young people’s health and human rights must, ultimately, be done at the country level, and most importantly, by women and young people themselves. Only then will we see an end to obstetric fistula and the beginning of the equality needed to ensure that everyone has the opportunity to enjoy a just and healthy life. 

News Abortion

Study: Telemedicine Abortion Care a Boon for Rural Patients

Nicole Knight

Despite the benefits of abortion care via telemedicine, 18 states have effectively banned the practice by requiring a doctor to be physically present.

Patients are seen sooner and closer to home in clinics where medication abortion is offered through a videoconferencing system, according to a new survey of Alaskan providers.

The results, which will be published in the Journal of Telemedicine and Telecare, suggest that the secure and private technology, known as telemedicine, gives patients—including those in rural areas with limited access—greater choices in abortion care.

The qualitative survey builds on research that found administering medication abortion via telemedicine was as safe and effective as when a doctor administers the abortion-inducing medicine in person, study researchers said.

“This study reinforces that medication abortion provided via telemedicine is an important option for women, particularly in rural areas,” said Dr. Daniel Grossman, one of the authors of the study and professor of obstetrics, gynecology, and reproductive sciences at the University of California San Francisco (UCSF). “In Iowa, its introduction was associated with a reduction in second-trimester abortion.”

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Maine and Minnesota also provide medication abortion via telemedicine. Clinics in four states—New York, Hawaii, Oregon, and Washington—are running pilot studies, as the Guardian reported. Despite the benefits of abortion care via telemedicine, 18 states have effectively banned the practice by requiring a doctor to be physically present.

The researchers noted that even “greater gains could be made by providing [medication abortion] directly to women in their homes,” which U.S. product labeling doesn’t allow.

In late 2013, researchers with Ibis Reproductive Health and Advancing New Standards in Reproductive Health interviewed providers, such as doctors, nurses, and counselors, in clinics run by Planned Parenthood of the Great Northwest and the Hawaiian Islands that were using telemedicine to provide medication abortion. Providers reported telemedicine’s greatest benefit was to pregnant people. Clinics could schedule more appointments and at better hours for patients, allowing more to be seen earlier in pregnancy.

Nearly twenty-one percent of patients nationwide end their pregnancies with medication abortion, a safe and effective two-pill regime, according to the most recent figures from the U.S. Centers for Disease Control and Prevention.

Alaska began offering the abortion-inducing drugs through telemedicine in 2011. Patients arrive at a clinic, where they go through a health screening, have an ultrasound, and undergo informed consent procedures. A doctor then remotely reviews the patients records and answers questions via a videoconferencing link, before instructing the patient on how to take the medication.

Before 2011, patients wanting abortion care had to fly to Anchorage or Seattle, or wait for a doctor who flew into Fairbanks twice a month, according to the study’s authors.

Beyond a shortage of doctors, patients in Alaska must contend with vast geography and extreme weather, as one physician told researchers:

“It’s negative seven outside right now. So in a setting like that, [telemedicine is] just absolutely the best possible thing that you could do for a patient. … Access to providers is just so limited. And … just because you’re in a state like that doesn’t mean that women aren’t still as much needing access to these services.”

“Our results were in line with other research that has shown that this service can be easily integrated into other health care offered at a clinic, can help women access the services they want and need closer to home, and allows providers to offer high-level care to women from a distance,” Kate Grindlay, lead author on the study and associate at Ibis Reproductive Health, said in a statement.

Commentary Contraception

The Promotion of Long-Acting Contraceptives Must Confront History and Center Patient Autonomy

Jamila Taylor

While some long-acting reversible contraceptive methods were used to undermine women of color's reproductive freedom, those methods still hold the promise of reducing unintended pregnancy among those most at risk.

Since long-acting reversible contraceptives (LARCs), including intrauterine devices and hormonal contraceptive implants, are among the most effective means of pregnancy prevention, many family planning and reproductive health providers are increasingly promoting them, especially among low-income populations.

But the promotion of LARCs must come with an acknowledgment of historical discriminatory practices and public policy related to birth control. To improve contraceptive access for low-income women and girls of color—who bear the disproportionate effects of unplanned pregnancy—providers and advocates must work to ensure that the reproductive autonomy of this population is respected now, precisely because it hasn’t been in the past.

For Black women particularly, the reproductive coercion that began during slavery took a different form with the development of modern contraceptive methods. According to Dorothy Roberts, author of Killing the Black Body, “The movement to expand women’s reproductive options was marked with racism from its very inception in the early part of [the 20th] century.” Decades later, government-funded family planning programs encouraged Black women to use birth control; in some cases, Black women were coerced into being sterilized.

In the 1990s, the contraceptive implant Norplant was marketed specifically to low-income women, especially Black adults and teenage girls. After a series of public statements about the benefits of Norplant in reducing pregnancy among this population, policy proposals soon focused on ensuring usage of the contraceptive method. Federal and state governments began paying for Norplant and incentivizing its use among low-income women while budgets for social support programs were cut. Without assistance, Norplant was not an affordable option, with the capsules costing more than $300 and separate, expensive costs for implantation and removal.

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Soon, Norplant was available through the Medicaid program. Some states introduced (ultimately unsuccessful) bills that would give cash rewards to entice low-income women on public assistance into using it; a few, such as Tennessee and Washington state, required that women receiving various forms of public assistance get information about Norplant. After proposing a bill to promote the use of Norplant in his state in 1994, a Connecticut legislator made the comment, “It’s far cheaper to give you money not to have kids than to give you money to have kids.” By that year, as Roberts writes, states had spent $34 million on Norplant-related care, much of it for women on Medicaid. Policymakers thought it was completely legitimate and cost-effective to control the reproduction of low-income women.

However, promoting this method among low-income Black women and adolescents was problematic. Racist, classist ideology dictating that this particular population of women shouldn’t have children became the basis for public policy. Even though coercive practices in reproductive health were later condemned, these practices still went on to shape cultural norms around race and gender, as well as medical practice.

This history has made it difficult to move beyond negative perceptions, and even fear, of LARCs, health care, and the medical establishment among some women of color. And that’s why it’s so important to ensure informed consent when advocating for effective contraceptive methods, with choice always at the center.

But how can policies and health-care facilities promote reproductive autonomy?

Health-care providers must deal head on with the fact that many contemporary women have concerns about LARCs being recommended specifically to low-income women and women of color. And while this is part of the broader effort to make LARCs more affordable and increasingly available to communities that don’t have access to them, mechanisms should be put in place to address this underlying issue. Requiring cultural competency training that includes information on the history of coercive practices affecting women of color could help family planning providers understand this concern for their patients.

Then, providers and health systems must address other barriers that make it difficult for women to access LARCs in particular. LARCs can be expensive in the short term, and complicated billing and reimbursement practices in both public and private insurance confuse women and providers. Also, the full cost associated with LARC usage isn’t always covered by insurance.

But the process shouldn’t end at eliminating barriers. Low-income Black women and teens must receive comprehensive counseling for contraception to ensure informed choice—meaning they should be given information on the full array of methods. This will help them choose the method that best meets their needs, while also promoting reproductive autonomy—not a specific contraceptive method.

Clinical guidelines for contraception must include detailed information on informed consent, and choice and reproductive autonomy should be clearly outlined when family planning providers are trained.

It’s crucial we implement these changes now because recent investments and advocacy are expanding access to LARCs. States are thinking creatively about how to reduce unintended pregnancy and in turn reduce Medicaid costs through use of LARCs. The Colorado Family Planning Initiative has been heralded as one of the most effective in helping women access LARCs. Since 2008, more than 30,000 women in Colorado have chosen LARCs as the result of the program. Provider education, training, and contraceptive counseling have also been increased, and women can access LARCs at reduced costs.

The commitment to LARCs has apparently yielded major returns for Colorado. Between 2009 and 2013, the abortion rate among teenagers older than 15 in Colorado dropped by 42 percent. Additionally, the birth rate for young women eligible for Medicaid dropped—resulting in cost savings of up to an estimated $111 million in Medicaid-covered births. LARCs have been critical to these successes. Public-private partnerships have helped keep the program going since 2015, and states including Delaware and Iowa have followed suit in efforts to experience the same outcomes.

Recognizing that prevention is a key component to any strategy addressing a public health concern, those strategies must be rooted in ensuring access to education and comprehensive counseling so that women and teens can make the informed choices that are best for them. When women and girls are given the tools to empower themselves in decision making, the results are positive—not just for what the government spends or does not spend on social programs, but also for the greater good of all of us.

The history of coercion undermining reproductive freedom among women and girls of color in this country is an ugly one. But this certainly doesn’t have to dictate how we move forward.


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