The Inconvenient Truth Facing Millions Who Suffer From Obstetric Fistula

More Care Reported Worldwide for Women Suffering with “The Backyard Disease,” but Problem Outpaces Efforts to Address

Santa Barbara, Calif. (April, 15, 2013)— Global data from 42 countries released this week on the Global Fistula Map reflects a grim future for most of the estimated two million women living with obstetric fistula worldwide and the estimated 50,000 to 100,000 who suffer the devastating birth injury and stigmatizing physical condition each year.

The Global Fistula Map was launched last year by Direct Relief, the Fistula Foundation, and the United Nations Population Fund (UNFPA) to consolidate and publish information on fistula treatment capacity and activity worldwide and help direct resources.  The incidence of new fistula cases and the prevalence of the condition has traditionally been very elusive due to the stigmatizing nature of the condition itself and because it typically occurs in areas lacking basic health services and related public health reporting.

For 2011, the number of women reported to have received fistula-repair surgery was 15,465, an increase of 6.1 percent from the totals reported for 2010, but far fewer than what would be required to address the estimated number of new cases occurring each year, let alone existing cases.

Obstetric fistula is one of the most devastating childbirth injuries and typically occurs when a woman without access to a skilled birth attendant or emergency medical care encounters prolonged, obstructed labor.  The extended pressure destroys internal tissue, creating an opening between the birth canal and bladder or rectum.  The prolonged, obstructed labour also often results in the tragic loss of the baby’s life, with the devastation compounded by the woman being left incontinent and unable to control her bladder and/or bowels for the rest of her life if the problem is not addressed surgically.

“The Backyard Disease

Often abandoned by their husbands and families, women with obstetric fistula find themselves ostracized from society. Girls drop out of school, women cannot work, and simple things—like getting on a bus—become an ordeal because of the way the sufferer smells.  Known as “the backyard disease,” fistula is a little-known social affliction which is extremely stigmatized within society.

Fistula was once common throughout the world, but over the last century has been virtually eradicated in Europe and North America through improved medical care.  In the United States, the last fistula hospital, now the site of the Waldorf Astoria Hotel in New York, closed in 1895 because of diminishing cases.

“Tragically, there are unacceptably high numbers of fistula cases, yet we see from the map data gathered so far that treatment currently only reaches a fraction of patients annually—not counting the significant backlog of cases,” said Gillian Slinger, UNFPA Coordinator of the Campaign to End Fistula. “Documenting where treatment is available is critical to providing care, raising resources and restoring the health and dignity of women and girls living with fistula.  If we know where service gaps are, we can then better steer activities forward, to get help to all those who need it.”

The Global Fistula Map is an evolving collaborative effort developed by Direct Relief and can be found at www.GlobalFistulaMap.org. The new edition reports on 238 health facilities providing 17,878 fistula repairs in 42 countries across Africa, Southeast Asia, and the Middle East, displaying data from the most recent year for which a health facility submitted the Global Fistula Map Survey. Data is therefore either shown for services provided in 2010 or 2011. While the reported availability of surgical treatment for obstetric fistula is growing, the current capacity of most fistula treatment facilities remains limited.  Less than 10 percent of health facilities treat more than 200 women per year and nearly half of all facilities have only one or no surgeons permanently on-site.

“The latest survey numbers, while disheartening, only push us to work harder to help repair the physical and emotional wounds of the women living with fistula,” said Lindsey Pollaczek, Senior Program Manager at Direct Relief.  “For Direct Relief, the Global Fistula Map enables the organization to know where fistula surgery is available, allowing us to increase our support of medical and surgical supplies to those treatment facilities, a critical component in helping sustain and expand their ability to provide care to women in need.”

Some of the new features of the Global Fistula Map include: new facilities reporting data; data on rehabilitation and reintegration services; stories of women who have received surgical repairs; and sources of financial support for fistula repair services.  The map will be continuously updated with information provided by experts and practitioners around the globe about facilities providing fistula repair and rehabilitation services.

“The Global Fistula Map is a crucial step forward in the field of fistula treatment. It is a dynamic and powerful tool that can help target scarce resources where they are most needed to treat women with obstetric fistula,” said Kate Grant, CEO of the Fistula Foundation.

Explore and share the map: www.GlobalFistulaMap.org

About Direct Relief
Direct Relief is a medical relief organization active in all 50 states and 70 countries.  It works with more than 1,000 health clinics across the U.S. to assist in emergencies and an ongoing basis, providing them with free medications for people in need. The organization has been among the world’s largest medical suppliers in Haiti after the 2010 earthquake, has top charity ratings, including four-star and “top-notch” rating from Charity Navigator, and a 99% fundraising efficiency rating from Forbes magazine.  Direct Relief was awarded the 2011 Peter F. Drucker Award for Nonprofit Innovation for its ability to adapt the insight, approaches, and tools of commercial technology for humanitarian purposes. For more information, please visit www.DirectRelief.org

 

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