No More Suffering in Silence: The Human Rights Dimensions of Obstetric Fistula

Agnes Odhiambo

In Kenya, as in many other countries, the health care system lacks the resources to provide care to those who need it, and patients also have few means for exercising their rights.

This article 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.

Mwendwa P. was 16 when she became pregnant for the first time. When she went into labor, she did not want to go to the hospital near her town in Kenya because, as she told me, “I had heard that nurses abuse girls who get pregnant when they go to deliver.”

Mwendwa went through painful labor at home for close to 24 hours before going to the hospital. There, her fears were confirmed:  “She [the nurse] told me to open my legs the way I did during sex. I felt so embarrassed because there were other women in the room.”  

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A few years later, when Mwendwa was in labor with her fourth child, she could not face the mistreatment again and decided to deliver at home with a traditional birth attendant. Unfortunately, she had complications. She developed obstetric fistula, which caused her to leak urine and feces constantly for years. Finally she got treatment through a fistula surgery “camp” far from her home.

When I asked Mwendwa why she had not sought treatment for fistula at the provincial hospital close to her home, I learned that Mwendwa had faced poor treatment in health facilities many other times, including once when her child was severely ill. She told me, “I was referred there [to hospital] to take the baby because she had diarrhea and a cough. The child was very ill. Instead they kept me waiting. I had to go back home. They talk very badly. They just toss you from one person to another. They don’t even care. I could not go back there.”

Mwendwa never lodged a grievance about the bad treatment in health facilities. She told me that she was afraid the nurses would retaliate.

In Kenya, as in many other countries, the health care system lacks the resources to provide care to those who need it, to ensure that there are enough facilities, facilities are well-staffed and stocked, or to ensure that staff are paid, get access to training, or are treated with respect themselves. Even when resources are limited what is available is often mismanaged or misused, and monitoring of how resources are allocated and used or how the health system is performing is inadequate. The poverty of the health care system itself results in a climate in which patient abuse and mistreatment is widespread, but often goes unreported and carries no consequences.

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With one of the highest rates of maternal death in the world, a woman in Niger has a one in seven chance of dying in childbirth or pregnancy during her lifetime.

By age 16, more than half of girls in Niger are married, and many have already borne children. The overwhelming majority of these births are at home—not at health facilities. Nationwide, barely one-third of births are assisted by trained health professionals.

Click here to view the entire photo essay profiling nurse-midwives who participated in a recent training by EngenderHealth’s Fistula Care Project, which is supported by the U.S. Agency for International Development (USAID), as well as young Nigerien women who are benefiting from fistula repair surgery and better maternal health services. With EngenderHealth’s—and your—help, women and girls here can have a better tomorrow.

Patients also have few means for exercising their rights. The opportunity for patients to file a formal complaint about health system challenges encountered when seeking care or abusive treatment in health facilities and to get any redress is virtually nonexistent. There are token “suggestion boxes” on walls of many facilities, but health administrators in Kenya told me they’re barely used. Kenya makes no effort to enable illiterate patients to lodge complaints. Patients are not systematically informed of their rights, or of how to lodge grievances. Kenyan health authorities are making slow progress toward establishing a grievance policy, but in the meantime, mistreatment by health workers continues without remedy, and the health care system does not get the benefit of formalized feedback from patients.   

A dysfunctional grievance system is bad for health care of all kinds. But it is of particular relevance for women and for efforts to eradicate conditions like fistula. Fistula would rarely occur if women had access to family planning information and services to make informed choices about their sexual and reproductive lives and to emergency obstetric care when they needed it. Distance, cost, lack of autonomy, lack of transport, lack of information about potential complications during pregnancy and childbirth, the advantages of facility deliveries, and other barriers stand in the way of many women who need such care. But for others, experience with abusive and poor-quality care, and the lack of means to seek redress for poor treatment in health facilities without facing retaliation keeps them from seeking to deliver their babies in health facilities that offer skilled care. There is a direct relationship: when a woman experiencing obstructed labor delays seeking care due to fear of abusive treatment, the experience can end in fistula. 

A functional grievance system is also important for successful fistula treatment. I interviewed women, like Mwendwa, who had waited years or even decades to seek fistula repair surgery, suffering all the while. Some did not know treatment was possible, but others who had heard of repair surgery delayed seeking treatment because the fear of being abused and humiliated by health workers was paralyzing.

Indeed, several fistula survivors I interviewed said nurses rebuked them for” urinating”on their beds and refused to change their bedding, despite the fact that incontinence is the main consequence of the very condition for which they were in the hospital in the first place. Nyakiriro C. told me that hospital staff asked her how an“old woman”like herself could wet the bed, told her to go to another hospital, and said they were“tired”  of her. Word gets around quickly when people are treated that way, and worse, when it happens in hospitals. When there’s no system to report such mistreatment and get a remedy, both for the person who has been mistreated and for the health care system, it’s hardly surprising that so many women suffer for years from fistulas that could be repaired.

Countries like Kenya with high rates of maternal deaths and injuries, including fistula, are saying all sorts of positive things these days about improving maternal health care. However, things are not improving for many and women, particularly the poor, illiterate, and rural, continue to die needlessly during pregnancy and childbirth or to live for years in pain and misery due to injuries like fistula. If they’re serious about saving women and their babies, they should listen to patients. Fistula survivors would have a lot to tell them about what stopped them from seeking skilled health care during labor, what problems they encountered in health facilities, or what deterred them from seeking surgical repair. Their insights could make a real difference in improving the health system and helping other women have healthy, safe deliveries and avoid fistulas. An accessible grievance system is vital for getting their feedback, providing remedies, and treating these women with the dignity they deserve. 

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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.

News Health Systems

What Happens When a Catholic-Run Clinic Comes to Your Local Walgreens?

Amy Littlefield

“It causes us great concern when we think about vulnerable populations ... [who] may need to use these clinics for things like getting their contraception prescribed and who would never think that when they went into a Walgreens they would be restricted by Catholic doctrine,” Lorie Chaiten, director of the women’s and reproductive rights project of the ACLU of Illinois, told Rewire.

One of the largest Catholic health systems is set to begin running health clinics inside 27 Walgreens stores in Missouri and Illinois next week. The deal between Walgreens and SSM Health has raised concerns from public interest groups worried that care may be compromised by religious doctrine.

Catholic health systems generally follow directives issued by the U.S. Conference of Catholic Bishops that restrict access to an array of services, including abortion care, contraception, tubal ligations, vasectomies, and fertility treatments.

“We are concerned that the clinics will likewise be required to follow the [directives], thereby severely curtailing access to important reproductive health services, information, and referrals,” MergerWatch, the National Health Law Program, and the American Civil Liberties Unions of Illinois and Missouri wrote in a letter to Walgreens on Wednesday. They also sent a letter to SSM Health.

In a statement emailed to Rewire, Walgreens said its relationship with SSM Health “will not have any impact on any of our current clinic or pharmacy policies and procedures.”

SSM Health emailed a statement saying it “will continue to offer the same services that are currently available at Walgreens Healthcare Clinics today.” If a patient needs services “that are beyond the scope of what is appropriate for a retail clinic setting, they will be referred to a primary care physician or other provider of their choice,” the statement read.

A spokesperson for SSM Health demurred when Rewire asked if that would include referrals for abortion care.

“I’ve got to check this part out, my apologies, this is one that hadn’t occurred to me,” said Jason Merrill, the spokesperson.

Merrill later reiterated SSM Health’s statement that it would continue to offer the same services.

Catholic health systems have in recent years expanded control over U.S. hospitals, with one in six acute-care hospital beds now in a Catholic-owned or -affiliated facility. Patients in such hospitals have been turned away while miscarrying, denied tubal ligations, and refused abortion care despite conditions like brain cancer.

Catholic health systems have also expanded into the broader landscape of outpatient services, raising new questions about how religion could influence other forms of care.

“The whole health system is transforming itself with more and more health care being delivered outside the hospital,” Lois Uttley, director of MergerWatch, told Rewire. “So we are looking carefully to make sure that the religious restrictions that have been such a problem for reproductive health care at Catholic hospitals are not now transferred to these drug store clinics or to urgent care centers or free-standing emergency rooms.”

Walgreens last year announced a similar arrangement with the Catholic health system Providence Health & Services to bring up to 25 retail clinics to Oregon and Washington. After expressing concerns about the deal, the ACLU of Washington said it received assurances from both Walgreens and Providence that services at those clinics would not be affected by religious doctrine.

Meanwhile, the major urgent care provider CityMD recently announced a partnership with CHI Franciscan Health–which is affiliated with Catholic Health Initiatives–to open urgent care centers in Washington state.

“We’re seeing [Catholic health systems] going into the urgent care business and into the primary care business and in accountable care organizations, where they are having an influence on the services that are available to the public and to consumers,” Susan Berke Fogel, director of reproductive health at the National Health Law Program, told Rewire.

GoHealth Urgent Care, which describes itself as “one of the fastest growing urgent care companies in the U.S.,” announced an agreement this year with Dignity Health to bring urgent care centers to California’s Bay Area. Dignity Health used to be called Catholic Healthcare West, but changed its name in 2012.

“This is another pattern that we’ve seen of Catholic health plans and health providers changing their names to things that don’t sound so Catholic,” Lois Uttley said.

 

In the letters sent Wednesday, the National Health Law Program and other groups requested meetings with Walgreens and SSM Health to discuss concerns about the potential influence of religion on the clinics.

“It causes us great concern when we think about vulnerable populations, we think about low-income people… people who… may need to use these clinics for things like getting their contraception prescribed and who would never think that when they went into a Walgreens they would be restricted by Catholic doctrine,” Lorie Chaiten, director of the Reproductive Rights Project of the ACLU of Illinois, told Rewire.

The new clinics in Walgreens will reportedly be called “SSM Health Express Clinics at Walgreens.” According to SSM Health’s website, its initials “[pay] tribute” to the Sisters of St. Mary.

“We are fairly forthcoming with the fact that we are a mission-based health care organization,” Merrill told Rewire. “That’s something we embrace. I don’t think it’s anything we would hide.”

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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