A Fistula Surgeon’s Perspective on Strategies to Fight Fistula

Dr. Mulu Muleta

There is global consensus on the need for improved access to quality and sustainable fistula care and training services; postoperative social-reintegration services; additional research and consistent allocation of resources for this cause.

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.

I grew up in rural Ethiopia.  I’ve seen first-hand the devastating impact of obstetric fistula on women bravely suffering with this preventable injury.  When I was completing post-graduate  school in Ethiopia’s capital Addis Ababa, I had the opportunity to train in fistula surgery.   I found this work to be uniquely compelling and chose at that point to focus my career on helping women in Ethiopia and other countries get the life-changing treatment for fistula.  That was nearly twenty years ago, and I still find fistula surgery deeply rewarding work. 

We must recognize that most obstetric fistula care, prevention, training and social re-integration services operate outside the government health sector often involving surgeons who come for short visits. The very few non- governmental specialized fistula repair and training centers are unable to meet the enormous need for fistula care and training services and long term sustainability of such services is not certain.

There is global consensus on the need for improved access to quality and sustainable fistula care and training services; accessible postoperative social-reintegration services; improved information through researches based on hard data and on the need for consistent allocation of resources for this cause.  The need for prevention of obstetric fistula and safe motherhood is also critical.

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I am therefore thrilled to be working for Women and Health Alliance International (WAHA) because WAHA’s strategy acknowledges the contribution of partners engaged in obstetric fistula prevention and different activities to improve health of women.  Most importantly, WAHA focuses on this integrative approach to fighting fistula care – an approach which embraces prevention, research, training and social re-integration services; local capacity building; collaboration with other partners and community engagement as its strategic choice. WAHA International will make every effort to synchronize these fundamentals of global strategy for Women’s and Children’s health with the precedence of public institutions involved in the collaboration.  In addition to treatment  given  to women with obstetric fistula,  care of other women with postpartum complications — such as uterine prolapse and third degree perineal tears — is integrated to the whole range of patient care services of public institutions.

One truly exciting part of WAHA’s strategy is to work through universities.  In my home country, Ethiopia, we are working with three universities in Gondar, Adama and Jimma, respectively, to build sustained local capacity for fistula treatment, prevention and maternal health promotion. WAHA is building similar partnerships in Cameroon and Niger. Consultant specialists with basic surgical skill receive in-service training on fistula care. This knowledge and skill empowers the consultants not only to treat their patients — women with obstetric fistula — but also to transfer knowledge and skill to their trainees in postgraduate studies. Other health professionals such as midwives, nurses and health officers are trained in obstetric fistula prevention, pre-operative/ postoperative care at these public teaching institutions.

Integrating training at public institutions is ideal to broaden and maximize the number of competent professionals delivering the service in other governmental and non-governmental health care institutions.  Further, it provides a system for patient follow-up.  Also, an integrated approach improves health promotion, helps prevent and treat diseases, and often proves to be an efficient and cost-effective route to success. 

Local capacity building improves access to quality care through increased number of competent health professionals in the field and it is a sustainable approach to development. Community engagement and mobilization enables us to focus on the most vulnerable and hardest-to-reach women and on those living furthest from health services. It also enables us to generate demand for services, produce community based evidence of service effectiveness, and tailor programs to meet the needs of women. Community interventions will be honed in an ongoing effort to make programs targeted to women as effective as possible.  This women-centered approach to evaluation and programming is critical.  Collaboration enables partners to unite and take coordinated action since everyone has an important role to play.  Better health can only be achieved through collaboration among different sectors and partners with women’s needs at the center of strategies and programs. .   

News Health Systems

Complaint: Citing Catholic Rules, Doctor Turns Away Bleeding Woman With Dislodged IUD

Amy Littlefield

“It felt heartbreaking,” said Melanie Jones. “It felt like they were telling me that I had done something wrong, that I had made a mistake and therefore they were not going to help me; that they stigmatized me, saying that I was doing something wrong, when I’m not doing anything wrong. I’m doing something that’s well within my legal rights.”

Melanie Jones arrived for her doctor’s appointment bleeding and in pain. Jones, 28, who lives in the Chicago area, had slipped in her bathroom, and suspected the fall had dislodged her copper intrauterine device (IUD).

Her doctor confirmed the IUD was dislodged and had to be removed. But the doctor said she would be unable to remove the IUD, citing Catholic restrictions followed by Mercy Hospital and Medical Center and providers within its system.

“I think my first feeling was shock,” Jones told Rewire in an interview. “I thought that eventually they were going to recognize that my health was the top priority.”

The doctor left Jones to confer with colleagues, before returning to confirm that her “hands [were] tied,” according to two complaints filed by the ACLU of Illinois. Not only could she not help her, the doctor said, but no one in Jones’ health insurance network could remove the IUD, because all of them followed similar restrictions. Mercy, like many Catholic providers, follows directives issued by the U.S. Conference of Catholic Bishops that restrict access to an array of services, including abortion care, tubal ligations, and contraception.

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Some Catholic providers may get around the rules by purporting to prescribe hormonal contraception for acne or heavy periods, rather than for birth control, but in the case of copper IUDs, there is no such pretext available.

“She told Ms. Jones that that process [of switching networks] would take her a month, and that she should feel fortunate because sometimes switching networks takes up to six months or even a year,” the ACLU of Illinois wrote in a pair of complaints filed in late June.

Jones hadn’t even realized her health-care network was Catholic.

Mercy has about nine off-site locations in the Chicago area, including the Dearborn Station office Jones visited, said Eric Rhodes, senior vice president of administrative and professional services. It is part of Trinity Health, one of the largest Catholic health systems in the country.

The ACLU and ACLU of Michigan sued Trinity last year for its “repeated and systematic failure to provide women suffering pregnancy complications with appropriate emergency abortions as required by federal law.” The lawsuit was dismissed but the ACLU has asked for reconsideration.

In a written statement to Rewire, Mercy said, “Generally, our protocol in caring for a woman with a dislodged or troublesome IUD is to offer to remove it.”

Rhodes said Mercy was reviewing its education process on Catholic directives for physicians and residents.

“That act [of removing an IUD] in itself does not violate the directives,” Marty Folan, Mercy’s director of mission integration, told Rewire.

The number of acute care hospitals that are Catholic owned or affiliated has grown by 22 percent over the past 15 years, according to MergerWatch, with one in every six acute care hospital beds now in a Catholic owned or affiliated facility. Women in such hospitals have been turned away while miscarrying and denied tubal ligations.

“We think that people should be aware that they may face limitations on the kind of care they can receive when they go to the doctor based on religious restrictions,” said Lorie Chaiten, director of the women’s and reproductive rights project of the ACLU of Illinois, in a phone interview with Rewire. “It’s really important that the public understand that this is going on and it is going on in a widespread fashion so that people can take whatever steps they need to do to protect themselves.”

Jones left her doctor’s office, still in pain and bleeding. Her options were limited. She couldn’t afford a $1,000 trip to the emergency room, and an urgent care facility was out of the question since her Blue Cross Blue Shield of Illinois insurance policy would only cover treatment within her network—and she had just been told that her entire network followed Catholic restrictions.

Jones, on the advice of a friend, contacted the ACLU of Illinois. Attorneys there advised Jones to call her insurance company and demand they expedite her network change. After five hours of phone calls, Jones was able to see a doctor who removed her IUD, five days after her initial appointment and almost two weeks after she fell in the bathroom.

Before the IUD was removed, Jones suffered from cramps she compared to those she felt after the IUD was first placed, severe enough that she medicated herself to cope with the pain.

She experienced another feeling after being turned away: stigma.

“It felt heartbreaking,” Jones told Rewire. “It felt like they were telling me that I had done something wrong, that I had made a mistake and therefore they were not going to help me; that they stigmatized me, saying that I was doing something wrong, when I’m not doing anything wrong. I’m doing something that’s well within my legal rights.”

The ACLU of Illinois has filed two complaints in Jones’ case: one before the Illinois Department of Human Rights and another with the U.S. Department of Health and Human Services Office for Civil Rights under the anti-discrimination provision of the Affordable Care Act. Chaiten said it’s clear Jones was discriminated against because of her gender.

“We don’t know what Mercy’s policies are, but I would find it hard to believe that if there were a man who was suffering complications from a vasectomy and came to the emergency room, that they would turn him away,” Chaiten said. “This the equivalent of that, right, this is a woman who had an IUD, and because they couldn’t pretend the purpose of the IUD was something other than pregnancy prevention, they told her, ‘We can’t help you.’”

 

Tell us your story. Have religious restrictions affected your ability to access health care? Email stories@rewire.news

Commentary Human Rights

When It Comes to Zika and Abortion, Disabled People Are Too Often Used as a Rhetorical Device

s.e. smith

Anti-choicers shame parents facing a prenatal diagnosis and considering abortion, even though they don't back up their advocacy up with support. The pro-choice movement, on the other hand, often finds itself caught between defending abortion as an absolute personal right and suggesting that some lived potentials are worth more than others.

There’s only one reason anyone should ever get an abortion: Because that person is pregnant and does not want to be. As soon as anyone—whether they are pro- or anti-choice—starts bringing up qualifiers, exceptions, and scary monsters under the bed, things get problematic. They establish the seeds of a good abortion/bad abortion dichotomy, in which some abortions are deemed “worthier” than others.

And with the Zika virus reaching the United States and the stakes getting more tangible for many Americans, that arbitrary designation is on a lot of minds—especially where the possibility of developmentally impaired fetuses is concerned. As a result, people with disabilities are more often being used as a rhetorical device for or against abortion rights rather than viewed as actualized human beings.

Here’s what we know about Zika and pregnancy: The virus has been linked to microcephaly, hearing loss, impaired growth, vision problems, and some anomalies of brain development when a fetus is exposed during pregnancy, according to the Centers for Disease Control and Prevention. Sometimes these anomalies are fatal, and patients miscarry their pregnancies. Sometimes they are not. Being infected with Zika is not a guarantee that a fetus will develop developmental impairments.

We need to know much, much more about Zika and pregnancy. At this stage, commonsense precautions when necessary like sleeping under a mosquito net, using insect repellant, and having protected sex to prevent Zika infection in pregnancy are reasonable, given the established link between Zika and developmental anomalies. But the panicked tenor of the conversation about Zika and pregnancy has become troubling.

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In Latin America, where Zika has rampantly spread in the last few years, extremely tough abortion restrictions often deprive patients of reproductive autonomy, to the point where many face the possibility of criminal charges for seeking abortion. Currently, requests for abortions are spiking. Some patients have turned to services like Women on Web, which provides assistance with accessing medical abortion services in nations where they are difficult or impossible to find.

For pro-choice advocates in the United States, the situation in Latin America is further evidence of the need to protect abortion access in our own country. Many have specifically using Zika to advocate against 20-week limits on abortion—which are already unconstitutional, and should be condemned as such. Less than 2 percent of abortions take place after 20 weeks, according to the Guttmacher Institute. The pro-choice community is often quick to defend these abortions, arguing that the vast majority take place in cases where the life of the patient is threatened, the fetus has anomalies incompatible with life, or the fetus has severe developmental impairments. Microcephaly, though rare, is an example of an impairment that isn’t diagnosable until late in the second trimester or early in the third, so when patients opt for termination, they run smack up against 20-week bans.

Thanks to the high profile of Zika in the news, fetal anomalies are becoming a talking point on both sides of the abortion divide: Hence the dire headlines sensationalizing the idea that politicians want to force patients to give birth to disabled children. The implication of leaning on these emotional angles, rather than ones based on the law or on human rights, is that Zika causes disabilities, and no one would want to have a disabled child. Some of this rhetoric is likely entirely subconscious, but it reflects internalized attitudes about disabled people, and it’s a dogwhistle to many in the disability community.

Anti-choicers, meanwhile, are leveraging that argument in the other direction, suggesting that patients with Zika will want to kill their precious babies because they aren’t perfect, and that therefore it’s necessary to clamp down on abortion restrictions to protect the “unborn.” Last weekend, for instance, failed presidential candidate Sen. Marco Rubio (R-FL) announced that he doesn’t support access to abortion for pregnant patients with the Zika virus who might, as a consequence, run the risk of having babies with microcephaly. Hardline anti-choicers, unsurprisingly, applauded him for taking a stand to protect life.

Both sides are using the wrong leverage in their arguments. An uptick in unmet abortion need is disturbing, yes—because it means that patients are not getting necessary health care. While it may be Zika exposing the issue of late, it’s a symptom, not the problem. Patients should be able to choose to get an abortion for whatever reason and at whatever time, and that right shouldn’t be defended with disingenuous arguments that use disability for cover. The issue with not being able to access abortions after 20 weeks, for example, isn’t that patients cannot access therapeutic abortions for fetuses with anomalies, but that patients cannot access abortions after 20 weeks.

The insistence from pro-choice advocates on justifying abortions after 20 weeks around specific, seemingly involuntary instances, suggests that so-called “late term abortions” need to be circumstantially defended, which retrenches abortion stigma. Few advocates seem to be willing to venture into the troubled waters of fighting for the right to abortions for any reason after 20 weeks. In part, that reflects an incremental approach to securing rights, but it may also betray some squeamishness. Patients don’t need to excuse their abortions, and the continual haste to do so by many pro-choice advocates makes it seem like a 20-week or later abortion is something wrong, something that might make patients feel ashamed depending on their reasons. There’s nothing shameful about needing abortion care after 20 weeks.

And, as it follows, nor is there ever a “bad” reason for termination. Conservatives are fond of using gruesome language targeted at patients who choose to abort for apparent fetal disability diagnoses in an attempt to shame them into believing that they are bad people for choosing to terminate their pregnancies. They use the specter of murdering disabled babies to advance not just social attitudes, but actual policy. Republican Gov. Mike Pence, for example, signed an Indiana law banning abortion on the basis of disability into law, though it was just blocked by a judge. Ohio considered a similar bill, while North Dakota tried to ban disability-related abortions only to be stymied in court. Other states require mandatory counseling when patients are diagnosed with fetal anomalies, with information about “perinatal hospice,” implying that patients have a moral responsibility to carry a pregnancy to term even if the fetus has impairments so significant that survival is questionable and that measures must be taken to “protect” fetuses against “hasty” abortions.

Conservative rhetoric tends to exceptionalize disability, with terms like “special needs child” and implications that disabled people are angelic, inspirational, and sometimes educational by nature of being disabled. A child with Down syndrome isn’t just a disabled child under this framework, for example, but a valuable lesson to the people around her. Terminating a pregnancy for disability is sometimes treated as even worse than terminating an apparently healthy pregnancy by those attempting to demonize abortion. This approach to abortion for disability uses disabled people as pawns to advance abortion restrictions, playing upon base emotions in the ultimate quest to make it functionally impossible to access abortion services. And conservatives can tar opponents of such laws with claims that they hate disabled people—even though many disabled people themselves oppose these patronizing policies, created to address a false epidemic of abortions for disability.

When those on either side of the abortion debate suggest that the default response to a given diagnosis is abortion, people living with that diagnosis hear that their lives are not valued. This argument implies that life with a disability is not worth living, and that it is a natural response for many to wish to terminate in cases of fetal anomalies. This rhetoric often collapses radically different diagnoses under the same roof; some impairments are lethal, others can pose significant challenges, and in other cases, people can enjoy excellent quality of life if they are provided with access to the services they need.

Many parents facing a prenatal diagnosis have never interacted with disabled people, don’t know very much about the disability in question, and are feeling overwhelmed. Anti-choicers want to force them to listen to lectures at the least and claim this is for everyone’s good, which is a gross violation of personal privacy, especially since they don’t back their advocacy up with support for disability programs that would make a comfortable, happy life with a complex impairment possible. The pro-choice movement, on the other hand, often finds itself caught between the imperative to defend abortion as an absolute personal right and suggesting that some lived potentials are worth more than others. It’s a disturbing line of argument to take, alienating people who might otherwise be very supportive of abortion rights.

It’s clearly tempting to use Zika as a political football in the abortion debate, and for conservatives, doing so is taking advantage of a well-established playbook. Pro-choicers, however, would do better to walk off the field, because defending abortion access on the sole grounds that a fetus might have a disability rings very familiar and uncomfortable alarm bells for many in the disability community.

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