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.”  

Like This Story?

Your $10 tax-deductible contribution helps support our research, reporting, and analysis.

Donate Now

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.

dsaf

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. 

__________________________________________________

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.

Roundups Sexual Health

This Week in Sex: The Sexually Transmitted Infections Edition

Martha Kempner

A new Zika case suggests the virus can be transmitted from an infected woman to a male partner. And, in other news, HPV-related cancers are on the rise, and an experimental chlamydia vaccine shows signs of promise.

This Week in Sex is a weekly summary of news and research related to sexual behavior, sexuality education, contraception, STIs, and more.

Zika May Have Been Sexually Transmitted From a Woman to Her Male Partner

A new case suggests that males may be infected with the Zika virus through unprotected sex with female partners. Researchers have known for a while that men can infect their partners through penetrative sexual intercourse, but this is the first suspected case of sexual transmission from a woman.

The case involves a New York City woman who is in her early 20s and traveled to a country with high rates of the mosquito-borne virus (her name and the specific country where she traveled have not been released). The woman, who experienced stomach cramps and a headache while waiting for her flight back to New York, reported one act of sexual intercourse without a condom the day she returned from her trip. The following day, her symptoms became worse and included fever, fatigue, a rash, and tingling in her hands and feet. Two days later, she visited her primary-care provider and tests confirmed she had the Zika virus.

Like This Story?

Your $10 tax-deductible contribution helps support our research, reporting, and analysis.

Donate Now

A few days after that (seven days after intercourse), her male partner, also in his 20s, began feeling similar symptoms. He had a rash, a fever, and also conjunctivitis (pink eye). He, too, was diagnosed with Zika. After meeting with him, public health officials in the New York City confirmed that he had not traveled out of the country nor had he been recently bit by a mosquito. This leaves sexual transmission from his partner as the most likely cause of his infection, though further tests are being done.

The Centers for Disease Control and Prevention (CDC)’s recommendations for preventing Zika have been based on the assumption that virus was spread from a male to a receptive partner. Therefore the recommendations had been that pregnant women whose male partners had traveled or lived in a place where Zika virus is spreading use condoms or abstain from sex during the pregnancy. For those couples for whom pregnancy is not an issue, the CDC recommended that men who had traveled to countries with Zika outbreaks and had symptoms of the virus, use condoms or abstain from sex for six months after their trip. It also suggested that men who traveled but don’t have symptoms use condoms for at least eight weeks.

Based on this case—the first to suggest female-to-male transmission—the CDC may extend these recommendations to couples in which a female traveled to a country with an outbreak.

More Signs of Gonorrhea’s Growing Antibiotic Resistance

Last week, the CDC released new data on gonorrhea and warned once again that the bacteria that causes this common sexually transmitted infection (STI) is becoming resistant to the antibiotics used to treat it.

There are about 350,000 cases of gonorrhea reported each year, but it is estimated that 800,000 cases really occur with many going undiagnosed and untreated. Once easily treatable with antibiotics, the bacteria Neisseria gonorrhoeae has steadily gained resistance to whole classes of antibiotics over the decades. By the 1980s, penicillin no longer worked to treat it, and in 2007 the CDC stopped recommending the use of fluoroquinolones. Now, cephalosporins are the only class of drugs that work. The recommended treatment involves a combination of ceftriaxone (an injectable cephalosporin) and azithromycin (an oral antibiotic).

Unfortunately, the data released last week—which comes from analysis of more than 5,000 samples of gonorrhea (called isolates) collected from STI clinics across the country—shows that the bacteria is developing resistance to these drugs as well. In fact, the percentage of gonorrhea isolates with decreased susceptibility to azithromycin increased more than 300 percent between 2013 and 2014 (from 0.6 percent to 2.5 percent).

Though no cases of treatment failure has been reported in the United States, this is a troubling sign of what may be coming. Dr. Gail Bolan, director of CDC’s Division of STD Prevention, said in a press release: “It is unclear how long the combination therapy of azithromycin and ceftriaxone will be effective if the increases in resistance persists. We need to push forward on multiple fronts to ensure we can continue offering successful treatment to those who need it.”

HPV-Related Cancers Up Despite Vaccine 

The CDC also released new data this month showing an increase in HPV-associated cancers between 2008 and 2012 compared with the previous five-year period. HPV or human papillomavirus is an extremely common sexually transmitted infection. In fact, HPV is so common that the CDC believes most sexually active adults will get it at some point in their lives. Many cases of HPV clear spontaneously with no medical intervention, but certain types of the virus cause cancer of the cervix, vulva, penis, anus, mouth, and neck.

The CDC’s new data suggests that an average of 38,793 HPV-associated cancers were diagnosed each year between 2008 and 2012. This is a 17 percent increase from about 33,000 each year between 2004 and 2008. This is a particularly unfortunate trend given that the newest available vaccine—Gardasil 9—can prevent the types of HPV most often linked to cancer. In fact, researchers estimated that the majority of cancers found in the recent data (about 28,000 each year) were caused by types of the virus that could be prevented by the vaccine.

Unfortunately, as Rewire has reported, the vaccine is often mired in controversy and far fewer young people have received it than get most other recommended vaccines. In 2014, only 40 percent of girls and 22 percent of boys ages 13 to 17 had received all three recommended doses of the vaccine. In comparison, nearly 80 percent of young people in this age group had received the vaccine that protects against meningitis.

In response to the newest data, Dr. Electra Paskett, co-director of the Cancer Control Research Program at the Ohio State University Comprehensive Cancer Center, told HealthDay:

In order to increase HPV vaccination rates, we must change the perception of the HPV vaccine from something that prevents a sexually transmitted disease to a vaccine that prevents cancer. Every parent should ask the question: If there was a vaccine I could give my child that would prevent them from developing six different cancers, would I give it to them? The answer would be a resounding yes—and we would have a dramatic decrease in HPV-related cancers across the globe.

Making Inroads Toward a Chlamydia Vaccine

An article published in the journal Vaccine shows that researchers have made progress with a new vaccine to prevent chlamydia. According to lead researcher David Bulir of the M. G. DeGroote Institute for Infectious Disease Research at Canada’s McMaster University, efforts to create a vaccine have been underway for decades, but this is the first formulation to show success.

In 2014, there were 1.4 million reported cases of chlamydia in the United States. While this bacterial infection can be easily treated with antibiotics, it often goes undiagnosed because many people show no symptoms. Untreated chlamydia can lead to pelvic inflammatory disease, which can leave scar tissue in the fallopian tubes or uterus and ultimately result in infertility.

The experimental vaccine was created by Canadian researchers who used pieces of the bacteria that causes chlamydia to form an antigen they called BD584. The hope was that the antigen could prompt the body’s immune system to fight the chlamydia bacteria if exposed to it.

Researchers gave BD584 to mice using a nasal spray, and then exposed them to chlamydia. The results were very promising. The mice who received the spray cleared the infection faster than the mice who did not. Moreover, the mice given the nasal spray were less likely to show symptoms of infection, such as bacterial shedding from the vagina or fluid blockages of the fallopian tubes.

There are many steps to go before this vaccine could become available. The researchers need to test it on other strains of the bacteria and in other animals before testing it in humans. And, of course, experience with the HPV vaccine shows that there’s work to be done to make sure people get vaccines that prevent STIs even after they’re invented. Nonetheless, a vaccine to prevent chlamydia would be a great victory in our ongoing fight against STIs and their health consequences, and we here at This Week in Sex are happy to end on a bit of a positive note.

Analysis Human Rights

ICE Releases Reports for 18 Migrants Who Died in Detention, Medical Neglect Is Suspected

Tina Vasquez

Though the death reviews released by ICE provide further insight into the conditions inside detention centers, the bigger concern among researchers and advocates is what they don't know.

A new report from Human Rights Watch (HRW) documents the deaths of 18 migrants in Immigration and Customs Enforcement custody from mid-2012 to mid-2015. In some cases, the deaths were likely preventable and the result of “substandard medical care and violations of applicable detention standards.”

These are not the only deaths that occurred, however. ICE acknowledges on its website that 31 deaths have occurred between May 2012 and mid-June of this year. It is unclear whether ICE intends to release information about the additional 13 deaths that have occurred.

Even so, these new findings add to a growing body of evidence showing what HRW calls “egregious violations” of medical care standards in detention centers. A February report found such violations contributed to at least eight in-custody deaths over a two-year period.

The public is just beginning to learn more about the deeply rooted problem, Clara Long, a researcher with Human Rights Watch and the lead researcher on the report, explained to Rewire. Long referenced an ongoing investigation by reporter Seth Freed Wessler at the Nation, which explores the numerous deaths that have occurred inside immigrant-only prisons.

Like This Story?

Your $10 tax-deductible contribution helps support our research, reporting, and analysis.

Donate Now

Though the death reviews released by ICE provide further insight into the conditions inside detention centers, the bigger concern among researchers and advocates is what they don’t know. For example, HRW worked with two independent medical experts to review the 18 death reviews released by ICE. The experts concluded that substandard medical care “probably contributed to the deaths of seven of the 18 detainees, while potentially putting many other detainees in danger as well.” Long told Rewire that the information provided by ICE simply wasn’t enough for their independent medical experts to determine that all 18 deaths were related to inadequate medical care, but that it was “likely.”

So there is the larger, systemic issue of inadequate medical care. Researchers at HRW also don’t know exactly how ICE collects information or why the agency releases information when it does. There’s also the core of the issue, as Long noted to Rewire: that the United States “unnecessarily” detains undocumented immigrants in “disturbing conditions” for prolonged periods of time.

Major Failures Lead to Death

The new HRW report identified two of the most dangerous ways ICE is failing migrants in detention: not following up on symptoms that require assistance and not responding quickly to emergencies. Both failures are illustrated by the case of 34-year-old Manuel Cota-Domingo, who died of heart disease, untreated diabetes, and pneumonia after being detained at the Eloy Detention Center in Eloy, Arizona.

ICE’s death review for Cota-Domingo suggests there was a language barrier and that Cota-Domingo was worried about having to pay for health care, which isn’t surprising given that detention centers make migrants pay for things like phone calls to their attorneys and family members. HRW asked Corrections Corporation of America, the company that runs the Eloy Detention Center, about potential fees for medical care, and it said there are no fees for such services at Eloy. For whatever reason, Cota-Domingo was not aware he had a legal right to access the medical care he needed.

When it became clear to his cellmate that Cota-Domingo was in serious need of medical attention and was having trouble breathing, the cellmate “banged on a wall to get a guard’s attention. His cellmate said he did that for three hours before anyone came to help,” Long said. The researcher told Rewire the death report outlines how investigators checked to see if the banging would have been audible to correctional officers.  It was. “Once [the cellmate] got their attention, our medical experts said this was something that should have been followed up on immediately, but the nurse decided to wait several hours before doing anything. All of these sluggish responses went on for eight hours. This is not how you treat an emergency,” Long said.

As Human Rights Watch noted in the report, “When officers finally notified medical providers of his condition, they delayed evaluating him and finally sent him to the hospital in a van instead of an ambulance. Both medical experts concluded that the combination of these delays likely contributed to a potentially treatable condition becoming fatal.”

In other death reviews by ICE, the agency’s own records show “evidence of the misuse of isolation for people with mental disabilities, inadequate mental health evaluation and treatment, and broader medical care failures.” Tiombe Kimana Carlos, Clemente Mponda, and Jose de Jesus Deniz-Sahagun all committed suicide in ICE detention after showing signs of “serious mental health conditions.” HRW’s independent experts determined that “inadequate mental health care or the misuse of isolation may have significantly exacerbated their mental health problems.”

It’s important to note that none of the death reviews released by ICE admit any wrongdoing, and that’s primarily because they don’t seek to examine whether medical negligence was at play. The reports simply present information about the deaths.

“There is no conclusion drawn, really,” Long told Rewire. “There’s one [report] in particular that even goes beyond that; it doesn’t even take into account the quality of care that led to the death, even though it’s clearly an issue of quality of care. That raises the question: What is the report for? ICE doesn’t conclude the cause. If you read [the death reviews], you can see there’s a lot of detailed information included in them that allows someone with expertise in correctional health care and who is familiar with how these systems should work, to make an assessment about whether care contributed to death, but that’s not something ICE doesat least not in the information we are able to access.”

ICE’s Murky Death-Review Process 

In a statement to Rewire, ICE explained that when a person dies while in the agency’s custody, their “death triggers an immediate internal inquiry into the circumstances.” The summary document ICE releases to the public is “the result of exhaustive case reviews conducted by ICE’s own Office of Detention Oversight (ODO), which was established in 2009 as part of the agency’s comprehensive detention reforms,” Lori K. Haley, a spokesperson with ICE, told Rewire in a prepared statement.

In fact, the ODO was created as a direct result of a series of reforms from the Obama administration after reports of human rights abuses and deaths in detention centers. The death review it produces includes a mix of findings from ICE’s own investigators and from a Beaumont, Texas-based company called Creative Corrections.

According to its website, Creative Corrections serves “local, state and federal government agencies,” offering “training, advising, professional management and consulting services” in “correctional, law enforcement, rule of law, and judicial systems.” The company contracts include the Department of Homeland Security (DHS).

“From what we can see from the documents, both ICE and Creative Corrections interview various people involved, check records, do what seems to be a pretty robust investigation for the death review,” Long said. “Unfortunately, in the set of death reviews that we used for this investigation, [the public doesn’t] have access to the Creative Corrections reports or any of the exhibits that go along with them.”

As the ICE spokesperson noted, the summary documents are typically written by ICE staff. The documents released to the public do not include medical records, full reports from Creative Corrections, or any exhibits that would provide more insight into the apparent medical neglect resulting in an estimated 161 people dying in ICE custody since October 2003. Six migrants have died in ICE custody since March 2016, two of whom died at two different detention centers in the same week. The causes of these most recent deathsand whether they can be attributed to medical neglect—is still unknown.

“If we had access to all of the information gathered during these investigations, including the reports from Creative Corrections, they would be very rich sources of information,” Long said.

Long and other researchers are also hoping for more information regarding the deaths that happen just after migrants are released from ICE custody. Teka Gulema, an Ethiopian asylum seeker detained at Etowah County Detention Center in Gadsden, Alabama, was released from ICE custody in November 2015 while in the hospital after becoming paralyzed from a bacterial infection acquired in detention. He died in January.

“One concern we have, and it’s a very big fear, is that there are multiple reports of folks who are released from ICE custody while in critical condition,” Long said. “When they die, they are no longer counted as in-custody deaths [by ICE]. We’re worried that’s a loophole being exploitedand for obvious reasons, we don’t have a number in terms of how often this is happening.”

The researcher said she has “no idea” when or why ICE decides to release information, including death reviews.

ICE did not respond to Rewire‘s request for information about its schedule or process for releasing such information.

“Maybe they released the 18 reports because they were cleared for release. Maybe a congressional office asked for them. Maybe they decided to be transparent. It could have been a [Freedom of Information Act] request from the ACLU. I wish I knew, but we really have no idea who decides—or why they decide—to release information, especially without making anyone aware that it’s been released,” the researcher told Rewire.

In April, ICE posted a series of spreadsheets about the inner workings of the detention system on their website that Long said provided a lot of information about how detention operates. The spreadsheets were removed from the site in a matter of days, too soon for many researchers—including HRW—to download them all.

“It’s a big system. We still don’t totally know how it works, which in itself is a major problem,” Long said. “One of the biggest lessons we’ve learned is to always check the ICE website. You never know what you’ll find.”

Rethinking Detention

DHS secretary Jeh Johnson is engaging in what some advocates are calling an “enforcement overdrive,” by funneling more undocumented immigrants into an already overcrowded detention system thanks to the detention bed quota established in 2009. This quota requires 34,000 undocumented migrants be locked up each day. It is in place to ensure more people get deported, though it’s costing taxpayers $2 billion a year while also creating “a profitable market for both private prison corporations and local governments,” the National Immigration Forum has said.

Reporting for the Nation, Michelle Chen recently noted that “migrants are warehoused under convoluted partnerships involving private vendors and state, local, and federal agencies. Homeland Security may contract out security duties to, or use facilities owned by, private vendors—dominated by Corrections Corporation of America (CCA) and GEO Group—with preordained headcount distributions ranging from 285 in Newark to more than 2,000 in San Antonio.”

Long told Rewire that 80 percent of migrants currently in detention are in what is considered “mandatory detention,” which, according to the Immigrant Legal Resource Center, means that “non-citizens with certain criminal convictions must be detained by ICE. People who are subject to mandatory detention are not entitled to a bond hearing and must remain in detention while removal proceedings are pending against them.” This also means that those in mandatory detention aren’t allowed to have an individual assessment by ICE of their case, “so they just sit in immigration detention indefinitely,” Long said.

“This system doesn’t work. We’re detaining far too many people for far too long and not determining on an individual level if they should be detained in the first place, taking into account all of the options available,” Long said. Options include being monitored by ICE using telephonic and in-person reporting, curfews, and home visits.

Long joins a long list of undocumented community members, researchers, organizers, activists, and other advocates pushing for the Obama administration—and whoever comes after it—to see detention as a last resort, rather than the only resort.

“We spend a lot of time talking about the disturbing conditions in detention centersthat’s what our report is about. But step one requires taking a step back and rethinking this system and how it’s unnecessary and also abuses vulnerable peoples’ rights,” Long said. “In terms of the legality of treating people this way, under U.S. and international law, people who are detained are entitled to medical treatment. The state has an obligation to provide care to this population. They are failing, and people are dying.”