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: United States a ‘Stark Outlier’ in Countries With Legal Abortion, Thanks to Hyde Amendment

Nicole Knight Shine

The study's lead author said the United States' public-funding restriction makes it a "stark outlier among countries where abortion is legal—especially among high-income nations."

The vast majority of countries pay for abortion care, making the United States a global outlier and putting it on par with the former Soviet republic of Kyrgyzstan and a handful of Balkan States, a new study in the journal Contraception finds.

A team of researchers conducted two rounds of surveys between 2011 and 2014 in 80 countries where abortion care is legal. They found that 59 countries, or 74 percent of those surveyed, either fully or partially cover terminations using public funding. The United States was one of only ten countries that limits federal funding for abortion care to exceptional cases, such as rape, incest, or life endangerment.

Among the 40 “high-income” countries included in the survey, 31 provided full or partial funding for abortion care—something the United States does not do.

Dr. Daniel Grossman, lead author and director of Advancing New Standards in Reproductive Health (ANSIRH) at the University of California (UC) San Francisco, said in a statement announcing the findings that this country’s public-funding restriction makes it a “stark outlier among countries where abortion is legal—especially among high-income nations.”

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The researchers call on policymakers to make affordable health care a priority.

The federal Hyde Amendment (first passed in 1976 and reauthorized every year thereafter) bans the use of federal dollars for abortion care, except for cases of rape, incest, or life endangerment. Seventeen states, as the researchers note, bridge this gap by spending state money on terminations for low-income residents. Of the 14.1 million women enrolled in Medicaid, fewer than half, or 6.7 million, live in states that cover abortion services with state funds.

This funding gap delays abortion care for some people with limited means, who need time to raise money for the procedure, researchers note.

As Jamila Taylor and Yamani Hernandez wrote last year for Rewire, “We have heard first-person accounts of low-income women selling their belongings, going hungry for weeks as they save up their grocery money, or risking eviction by using their rent money to pay for an abortion, because of the Hyde Amendment.”

Public insurance coverage of abortion remains controversial in the United States despite “evidence that cost may create a barrier to access,” the authors observe.

“Women in the US, including those with low incomes, should have access to the highest quality of care, including the full range of reproductive health services,” Grossman said in the statement. “This research indicates there is a global consensus that abortion care should be covered like other health care.”

Earlier research indicated that U.S. women attempting to self-induce abortion cited high cost as a reason.

The team of ANSIRH researchers and Ibis Reproductive Health uncovered a bit of good news, finding that some countries are loosening abortion laws and paying for the procedures.

“Uruguay, as well as Mexico City,” as co-author Kate Grindlay from Ibis Reproductive Health noted in a press release, “legalized abortion in the first trimester in the past decade, and in both cases the service is available free of charge in public hospitals or covered by national insurance.”

Analysis Abortion

‘Pro-Life’ Pence Transfers Money Intended for Vulnerable Households to Anti-Choice Crisis Pregnancy Centers

Jenn Stanley

Donald Trump's running mate has said that "life is winning in Indiana"—and the biggest winner is probably a chain of crisis pregnancy centers that landed a $3.5 million contract in funds originally intended for poor Hoosiers.

Much has been made of Republican Gov. Mike Pence’s record on LGBTQ issues. In 2000, when he was running for U.S. representative, Pence wrote that “Congress should oppose any effort to recognize homosexual’s [sic] as a ‘discreet and insular minority’ [sic] entitled to the protection of anti-discrimination laws similar to those extended to women and ethnic minorities.” He also said that funds meant to help people living with HIV or AIDS should no longer be given to organizations that provide HIV prevention services because they “celebrate and encourage” homosexual activity. Instead, he proposed redirecting those funds to anti-LGBTQ “conversion therapy” programs, which have been widely discredited by the medical community as being ineffective and dangerous.

Under Pence, ideology has replaced evidence in many areas of public life. In fact, Republican presidential nominee Donald Trump has just hired a running mate who, in the past year, has reallocated millions of dollars in public funds intended to provide food and health care for needy families to anti-choice crisis pregnancy centers.

Gov. Pence, who declined multiple requests for an interview with Rewire, has been outspoken about his anti-choice agenda. Currently, Indiana law requires people seeking abortions to receive in-person “counseling” and written information from a physician or other health-care provider 18 hours before the abortion begins. And thanks, in part, to other restrictive laws making it more difficult for clinics to operate, there are currently six abortion providers in Indiana, and none in the northern part of the state. Only four of Indiana’s 92 counties have an abortion provider. All this means that many people in need of abortion care are forced to take significant time off work, arrange child care, and possibly pay for a place to stay overnight in order to obtain it.

This environment is why a contract quietly signed by Pence last fall with the crisis pregnancy center umbrella organization Real Alternatives is so potentially dangerous for Indiana residents seeking abortion: State-subsidized crisis pregnancy centers not only don’t provide abortion but seek to persuade people out of seeking abortion, thus limiting their options.

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“Indiana is committed to the health, safety, and wellbeing [sic] of Hoosier families, women, and children,” reads the first line of the contract between the Indiana State Department of Health and Real Alternatives. The contract, which began on October 1, 2015, allocates $3.5 million over the course of a year for Real Alternatives to use to fund crisis pregnancy centers throughout the state.

Where Funding Comes From

The money for the Real Alternatives contract comes from Indiana’s Temporary Assistance for Needy Families (TANF) block grant, a federally funded, state-run program meant to support the most vulnerable households with children. The program was created by the 1996 Personal Responsibility and Work Opportunity Reconciliation Act signed by former President Bill Clinton. It changed welfare from a federal program that gave money directly to needy families to one that gave money, and a lot of flexibility with how to use it, to the states.

This TANF block grant is supposed to provide low-income families a monthly cash stipend that can be used for rent, child care, and food. But states have wide discretion over these funds: In general, they must use the money to serve families with children, but they can also fund programs meant, for example, to promote marriage. They can also make changes to the requirements for fund eligibility.

As of 2012, to be eligible for cash assistance in Indiana, a household’s maximum monthly earnings could not exceed $377, the fourth-lowest level of qualification of all 50 states, according to a report by the Congressional Research Service. Indiana’s program also has some of the lowest maximum payouts to recipients in the country.

Part of this is due to a 2011 work requirement that stripped eligibility from many families. Under the new work requirement, a parent or caretaker receiving assistance needs to be “engaged in work once the State determines the parent or caretaker is ready to engage in work,” or after 24 months of receiving benefits. The maximum time allowed federally for a family to receive assistance is 60 months.

“There was a TANF policy change effective November 2011 that required an up-front job search to be completed at the point of application before we would proceed in authorizing TANF benefits,” Jim Gavin, a spokesman for the state’s Family and Social Services Administration (FSSA), told Rewire. “Most [applicants] did not complete the required job search and thus applications were denied.”

Unspent money from the block grant can be carried over to following years. Indiana receives an annual block grant of $206,799,109, but the state hasn’t been using all of it thanks to those low payouts and strict eligibility requirements. The budget for the Real Alternatives contract comes from these carry-over funds.

According to the U.S. Department of Health and Human Services, TANF is explicitly meant to clothe and feed children, or to create programs that help prevent “non-marital childbearing,” and Indiana’s contract with Real Alternatives does neither. The contract stipulates that Real Alternatives and its subcontractors must “actively promote childbirth instead of abortion.” The funds, the contract says, cannot be used for organizations that will refer clients to abortion providers or promote contraceptives as a way to avoid unplanned pregnancies and sexually transmitted infections.

Parties involved in the contract defended it to Rewire by saying they provide material goods to expecting and new parents, but Rewire obtained documents that showed a much different reality.

Real Alternatives is an anti-choice organization run by Kevin Bagatta, a Pennsylvania lawyer who has no known professional experience with medical or mental health services. It helps open, finance, and refer clients to crisis pregnancy centers. The program started in Pennsylvania, where it received a $30 million, five-year grant to support a network of 40 subcontracting crisis pregnancy centers. Auditor General Eugene DePasquale called for an audit of the organization between June 2012 and June 2015 after hearing reports of mismanaged funds, and found $485,000 in inappropriate billing. According to the audit, Real Alternatives would not permit DHS to review how the organization used those funds. However, the Pittsburgh Post-Gazette reported in April that at least some of the money appears to have been designated for programs outside the state.

Real Alternatives also received an $800,000 contract in Michigan, which inspired Gov. Pence to fund a $1 million yearlong pilot program in northern Indiana in the fall of 2014.

“The widespread success [of the pilot program] and large demand for these services led to the statewide expansion of the program,” reads the current $3.5 million contract. It is unclear what measures the state used to define “success.”

 

“Every Other Baby … Starts With Women’s Care Center”

Real Alternatives has 18 subcontracting centers in Indiana; 15 of them are owned by Women’s Care Center, a chain of crisis pregnancy centers. According to its website, Women’s Care Center serves 25,000 women annually in 23 centers throughout Florida, Illinois, Indiana, Michigan, Minnesota, Ohio, and Wisconsin.

Women’s Care Centers in Indiana received 18 percent of their operating budget from state’s Real Alternatives program during the pilot year, October 1, 2014 through September 30, 2015, which were mostly reimbursements for counseling and classes throughout pregnancy, rather than goods and services for new parents.

In fact, instead of the dispensation of diapers and food, “the primary purpose of the [Real Alternatives] program is to provide core services consisting of information, sharing education, and counseling that promotes childbirth and assists pregnant women in their decision regarding adoption or parenting,” the most recent contract reads.

The program’s reimbursement system prioritizes these anti-choice classes and counseling sessions: The more they bill for, the more likely they are to get more funding and thus open more clinics.

“This performance driven [sic] reimbursement system rewards vendor service providers who take their program reimbursement and reinvest in their services by opening more centers and hiring more counselors to serve more women in need,” reads the contract.

Classes, which are billed as chastity classes, parenting classes, pregnancy classes, and childbirth classes, are reimbursed at $21.80 per client. Meanwhile, as per the most recent contract, counseling sessions, which are separate from the classes, are reimbursed by the state at minimum rates of $1.09 per minute.

Jenny Hunsberger, vice president of Women’s Care Center, told Rewire that half of all pregnant women in Elkhart, LaPorte, Marshall, and St. Joseph Counties, and one in four pregnant women in Allen County, are clients of their centers. To receive any material goods, such as diapers, food, and clothing, she said, all clients must receive this counseling, at no cost to them. Such counseling is billed by the minute for reimbursement.

“When every other baby born [in those counties] starts with Women’s Care Center, that’s a lot of minutes,” Hunsberger told Rewire.

Rewire was unable to verify exactly what is said in those counseling sessions, except that they are meant to encourage clients to carry their pregnancies to term and to help them decide between adoption or child rearing, according to Hunsberger. As mandated by the contract, both counseling and classes must “provide abstinence education as the best and only method of avoiding unplanned pregnancies and sexually transmitted infections.”

In the first quarter of the new contract alone, Women’s Care Center billed Real Alternatives and, in turn, the state, $239,290.97; about $150,000 of that was for counseling, according to documents obtained by Rewire. In contrast, goods like food, diapers, and other essentials for new parents made up only about 18.5 percent of Women’s Care Center’s first-quarter reimbursements.

Despite the fact that the state is paying for counseling at Women’s Care Center, Rewire was unable to find any licensing for counselors affiliated with the centers. Hunsberger told Rewire that counseling assistants and counselors complete a minimum training of 200 hours overseen by a master’s level counselor, but the counselors and assistants do not all have social work or psychology degrees. Hunsberger wrote in an email to Rewire that “a typical Women’s Care Center is staffed with one or more highly skilled counselors, MSW or equivalent.”

Rewire followed up for more information regarding what “typical” or “equivalent” meant, but Hunsberger declined to answer. A search for licenses for the known counselors at Women’s Care Center’s Indiana locations turned up nothing. The Indiana State Department of Health told Rewire that it does not monitor or regulate the staff at Real Alternatives’ subcontractors, and both Women’s Care Center and Real Alternatives were uncooperative when asked for more information regarding their counseling staff and training.

Bethany Christian Services and Heartline Pregnancy Center, Real Alternatives’ other Indiana subcontractors, billed the program $380.41 and $404.39 respectively in the first quarter. They billed only for counseling sessions, and not goods or classes.

In a 2011 interview with Philadelphia City Paper, Kevin Bagatta said that Real Alternatives counselors were not required to have a degree.

“We don’t provide medical services. We provide human services,” Bagatta told the City Paper.

There are pregnancy centers in Indiana that provide a full range of referrals for reproductive health care, including for STI testing and abortion. However, they are not eligible for reimbursement under the Real Alternatives contract because they do not maintain an anti-choice mission.

Parker Dockray is the executive director of Backline, an all-options pregnancy resource center. She told Rewire that Backline serves hundreds of Indiana residents each month, and is overwhelmed by demand for diapers and other goods, but it is ineligible for the funding because it will refer women to abortion providers if they choose not to carry a pregnancy to term.

“At a time when so many Hoosier families are struggling to make ends meet, it is irresponsible for the state to divert funds intended to support low-income women and children and give it to organizations that provide biased pregnancy counseling,” Dockray told Rewire. “We wish that Indiana would use this funding to truly support families by providing job training, child care, and other safety net services, rather than using it to promote an anti-abortion agenda.”

“Life Is Winning in Indiana”

Time and again, Bagatta and Hunsberger stressed to Rewire that their organizations do not employ deceitful tactics to get women in the door and to convince them not to have abortions. However, multiple studies have proven that crisis pregnancy centers often lie to women from the moment they search online for an abortion provider through the end of their appointments inside the center.

These studies have also shown that publicly funded crisis pregnancy centers dispense medically inaccurate information to clients. In addition to spreading lies like abortion causing infertility or breast cancer, they are known to give false hopes of miscarriages to people who are pregnant and don’t want to be. A 2015 report by NARAL Pro-Choice America found this practice to be ubiquitous in centers throughout the United States, and Rewire found that Women’s Care Center is no exception. The organization’s website says that as many as 40 percent of pregnancies end in natural miscarriage. While early pregnancy loss is common, it occurs in about 10 percent of known pregnancies, according to the American Congress of Obstetricians and Gynecologists.

Crisis pregnancy centers also tend to crop up next to abortion clinics with flashy, deceitful signs that lead many to mistakenly walk into the wrong building. Once inside, clients are encouraged not to have an abortion.

A Google search for “abortion” and “Indianapolis” turns up an ad for the Women’s Care Center as the first result. It reads: “Abortion – Indianapolis – Free Ultrasound before Abortion. Located on 86th and Georgetown. We’re Here to Help – Call Us Today: Abortion, Ultrasound, Locations, Pregnancy.”

Hunsberger denies any deceit on the part of Women’s Care Center.

“Clients who walk in the wrong door are informed that we are not the abortion clinic and that we do not provide abortions,” Hunsberger told Rewire. “Often a woman will choose to stay or return because we provide services that she feels will help her make the best decision for her, including free medical-grade pregnancy tests and ultrasounds which help determine viability and gestational age.”

Planned Parenthood of Indiana and Kentucky told Rewire that since Women’s Care Center opened on 86th and Georgetown in Indianapolis, many patients looking for its Georgetown Health Center have walked through the “wrong door.”

“We have had patients miss appointments because they went into their building and were kept there so long they missed their scheduled time,” Judi Morrison, vice president of marketing and education, told Rewire.

Sarah Bardol, director of Women’s Care Center’s Indianapolis clinic, told the Criterion Online Edition, a publication of the Archdiocese of Indianapolis, that the first day the center was open, a woman and her boyfriend did walk into the “wrong door” hoping to have an abortion.

“The staff of the new Women’s Care Center in Indianapolis, located just yards from the largest abortion provider in the state, hopes for many such ‘wrong-door’ incidents as they seek to help women choose life for their unborn babies,” reported the Criterion Online Edition.

If they submit to counseling, Hoosiers who walk into the “wrong door” and “choose life” can receive up to about $40 in goods over the course their pregnancy and the first year of that child’s life. Perhaps several years ago they may have been eligible for Temporary Assistance for Needy Families, but now with the work requirement, they may not qualify.

In a February 2016 interview with National Right to Life, one of the nation’s most prominent anti-choice groups, Gov. Pence said, “Life is winning in Indiana.” Though Pence was referring to the Real Alternatives contract, and the wave of anti-choice legislation sweeping through the state, it’s not clear what “life is winning” actually means. The state’s opioid epidemic claimed 1,172 lives in 2014, a statistically significant increase from the previous year, according to the Centers for Disease Control and Prevention. HIV infections have spread dramatically throughout the state, in part because of Pence’s unwillingness to support medically sound prevention practices. Indiana’s infant mortality rate is above the national average, and infant mortality among Black babies is even higher. And Pence has reduced access to prevention services such as those offered by Planned Parenthood through budget cuts and unnecessary regulations—while increasing spending on anti-choice crisis pregnancy centers.

Gov. Pence’s track record shows that these policies are no mistake. The medical and financial needs of his most vulnerable constituents have taken a backseat to religious ideology throughout his time in office. He has literally reallocated money for poor Hoosiers to fund anti-choice organizations. In his tenure as both a congressman and a governor, he’s proven that whether on a national or state level, he’s willing to put “pro-life” over quality-of-life for his constituents.