The Fistula Foundation

Posted on May 28, 2013

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A family friend of mine recently attended  the first annual International Day to End Obstetric Fistula at the UN.  I’m so grateful for the service he and the Fistula Foundation are doing for the global community.  To learn more about the fistula tragedy, the video below is narrated by Natalie Imbruglia and designed by The Draw Shop (which I’ve blogged about for their work on various TED videos in the past).  Just four minutes tells the story perfectly …

Obstetric Fistula: No Longer A Neglected Tragedy

Posted: 05/23/2013 10:16 am on the Huffington Post

In September of 1994, the world community gathered in Cairo for the United Nations International Conference on Population and Development (ICPD). It was the largest intergovernmental conference on population and development ever held, producing a comprehensive Programme of Action that remains today as both touchstone and framework for the field. Yet in all 194 pages of that landmark document — which covers everything from female empowerment to male responsibilities in family planning — the childbirth injury obstetric fistula is not mentioned. Not once.

Obstetric fistula is a profound traumatic injury that’s been ruining the lives of would-be mothers throughout history; the first historical occurrence recorded dates back to 2050 B.C. It’s an injury that affects women like 16-year old Goni, from Ethiopia, who labored for days until her stillborn baby was delivered, and was then left incontinent until surgery years later could heal her wounds. Yet, until a decade ago, fistula was literally not on the global health agenda, even though it is arguably the most devastating and disabling of all childbirth injuries.

The simple reason: women who suffer from fistula live almost exclusively in rural areas of very resource constrained countries, and are therefore some of the least empowered human beings on the planet. Obstetric fistula impacts almost no one in the developed world since it was largely eradicated a century ago when access to emergency obstetric care became widespread.

Nearly two decades after the ICPD, the world has come together to create a global, multi-sector response to this previously neglected scourge, and now the tide is turning. To both commemorate progress and inspire future efforts, the United Nations General Assembly has proclaimed today, May 23rd, as the first annual International Day to End Obstetric Fistula.

This date is particularly fitting because it’s been a decade since the United Nationslaunched its Campaign to End Fistula, helping strengthen the visibility of the issue and increase collaboration and coordination amongst doctors, hospitals, advocates and governments. Large bilateral donors, such as USAID’s funded Fistula Care program at Engender Health, have provided critical policy and research leadership. Further, a nascent organization, the International Society of Fistula Surgeons, was formed in 2007 to advance the practice of fistula surgery, a field that draws specialists from obstetrics, gynecology, general surgery and urology.

The International Federation of Gynecology and Obstetrics, in partnership with UNFPA, has pioneered both a training manual and a field-based fellowship training program. These multinational, bilateral and medical community efforts have proven critical to providing leadership, assessing need and injecting data into a field where little existed before, and distributing government resources where they are needed most.

The private sector fills the last crucial piece of the fistula treatment equation. Nongovernmental organizations, such as the Fistula Foundation, are advocating on behalf of fistula patients and forging relationships with corporate and individual donors to raise and subsequently distribute funds that expand the capacity for treatment at facilities in Africa and Asia.

In response to the vast need and growing awareness, generous donors have stepped forward to help the Fistula Foundation expand dramatically in the last four years, now supporting treatment sites in 19 countries. As donors in the United States and Europe learn about the issue, coffers to fund treatment have swelled.

Organizations like ours also fill a role in increasing the capacity of hospitals, through injections of critical funding for surgeries and training by expert surgeons to help provide fistula treatment where none was available before. Direct Relief provided key leadership in working with us and UNFPA to pioneer the first Global Fistula Map, a dynamic tool that provides information on treatment facilities around the world.

Several leading private sector corporations have also stepped forward to fund and support fistula treatment and prevention efforts, but none with greater resolve and dedication than Johnson & Johnson. The company has provided significant funds and supplies for fistula treatment, and been a strategic partner with our Foundation helping get critical funds to advance treatment in under-resourced communities. In addition, internet powerhouse Google has given in-kind advertising on its network to the Fistula Foundation to help expand awareness and fund our operation.

The media has taken notice as well, creating awareness of fistula among citizens and potential donors, where little existed before. Two-time Pulitzer Prize winning journalist Nicholas Kristof at The New York Times elevated the issue through numerous columns that brought the stories of women with fistula and the doctors that treat them to the attention of his readers. His bestselling book, “Half the Sky: Turning Oppression into Opportunity for Women Worldwide” (published with his Pulitzer Prize-winning wife, Sheryl WuDunn), devoted a section to fistula. Further, Oprah Winfrey featured the work of pioneering fistula surgeon and founder of the Addis Ababa Fistula Hospital, Dr. Catherine Hamlin, on two of her programs.

We have a long way to go to provide treatment to the enormous backlog of women with untreated fistula, let alone provide the emergency obstetric care needed to prevent the injury. But while there is no silver bullet to solving this global problem, our coordinated response is making headway.

We must continue to fight for the women who have been traumatically injured while trying to bring a child into the world. They need our help to regain their place in their families, their communities and their societies.

More on obstetric fistula….

Obstetric fistula is the most devastating and serious of all childbirth injuries. It happens because most mothers in poor countries give birth without any medical help. So many are young girls. Complications from pregnancy and childbirth are among the leading causes of death and disability for women of reproductive age in these places. Obstetric fistula was largely eliminated in the United States in the latter part of the 19th century and early 20th century with improved obstetric care in general and the use of c-sections in particular to relieve obstructed labor.

After enduring days of agonizing, obstructed labor a woman’s body is literally broken by childbirth. During labor contractions, the baby’s head is constantly pushing against the mother’s pelvic bone — causing tissue to die due to lack of blood flow to this area. All of that pushing creates a hole, or in medical terms a “fistula”, between the birth passage and an internal organ such as the bladder or rectum. A woman cannot hold her urine, and sometimes bowel content as well.

Her baby is unlikely to survive. If she survives, a woman with fistula is likely to be rejected by her husband because of her inability to bear more children and her foul smell. She will be shunned by her community and forced to live an isolated existence. These women suffer profound psychological trauma resulting from their utter loss of status and dignity, in addition to suffering constantly from their physical internal injury.

The numbers are staggering

Right now, hundreds of thousands of women are suffering from this heartbreaking, treatable childbirth injury because they are too poor to afford surgery that costs about $450.

This number keeps growing bigger. Each year approximately 30,000 – 50,000 women develop this childbirth injury. The international capacity to treat fistula patients has been estimated at just over 14,000 a year — less than half the amount of new women who develop a fistula each year. Surgeons would describe this as an enormous backlog of untreated patients. There is clearly an overwhelming need for treating far more women.

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Fast Facts

  • Fistula used to be present in the U.S. and Europe, but was largely eliminated in the latter part of the 19th century and early 20th century with improved obstetric care in general and the use of c-sections in particular to relieve obstructed labor.
  • The World Health Organization estimates there may be as many as 50,000 — 100,000 new cases of fistula each year, yet the global treatment capacity is less than 20,000 cases a year. There is a large unmet need for treatment. Fistula is most prevalent in sub-Saharan Africa and Asia.
  • For example, in Ethiopia, there are an estimated 100,000 women suffering with untreated fistula, and another 9,000 women who develop fistula each year.
  • Less than 6 in 10 women in developing countries give birth with any trained professional, such as a midwife or a doctor.  When complications arise, as they do in approximately 15% of all births, there is no one available to treat the woman, leading to disabling injuries like fistula, and even death.
  • The root causes of fistula are grinding poverty and the low status of women and girls.  In developing countries, the poverty and malnutrition in children contributes to the condition of stunting, where the girl skeleton, and therefore pelvis as well, do not fully mature.  This stunted condition can contribute to obstructed labor, and therefore fistula.
  • But, fistula is both preventable and treatable.  For instance, the Addis Ababa Fistula Hospital has treated over 30,000 women over 33 years.  Their cure rate is over 90%.  Fistula can be prevented if laboring women are provided with adequate emergency obstetric care when complications arise.

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