For half of her life, 32-year-old Joy Emmanuel lived with a disease that repelled her neighbors, friends, and even her husband. Pregnant at the age of 16, this Nigerian woman endured a painful two-day labor on the floor of her home that caused her to develop a hole between her vagina and rectum, a condition known as obstetric fistula.
From that day onward, urine and feces leaked uncontrollably from her body, producing a fetid odor that she tried to eliminate by changing her clothes several times a day. After her husband abandoned her, she isolated herself from everyone and began to accept that she would have to live like this for the rest of her life.
What Joy Emmanuel was not aware of, however, was that fistula – product of a prolonged obstructed labor – is a completely preventable and treatable condition-so much so that in Europe and the U.S., fistula was virtually eliminated in the late 1800s with the discovery of the Cesarean section. In sub-Saharan Africa and South Asia, however, fistula continues to affect an estimated 2 million women, with 50,000 to 100,000 new cases each year.
In the past decade, stories like those of Joy Emmanuel have captured the attention of USAID, the UN Population Fund, NGOs, celebrities and the U.S. Congress. One of the most recent legislative initiatives to address the disease is The Fistula Prevention, Treatment, Hope and Dignity Restoration Act of 2013, H.R. 2888. Introduced by Rep. Carolyn Maloney (D-NY) and 11 cosponsors, the bill would authorize the President to provide assistance to prevent and treat women suffering from fistula should it become law.
“This legislation will help ease the suffering of millions of mothers, reduce the impact on their families and communities, and rededicate the leadership of the U.S. to the health and safety of women and children around the globe,” Maloney said.
Two previous versions of the bill have been presented by Maloney but have failed to be voted into law. The same occurred with a rival bill presented by Rep. Rosa DeLauro, which proposed creating fistula centers serviced by visiting American surgeons rather than focusing on prevention, as does the Maloney bill.
Since fistula is caused by a combination of different factors that are entirely avoidable – such as pregnancy at an early age, chronic maternal malnutrition and a lack of skilled care at delivery – H.R. 2888 proposes facilitating access to sexual and reproductive health services, emergency obstetric care, prenatal care, family planning, and comprehensive sexuality education.
Besides providing treatment of fistula, which can be surgically corrected at an estimated cost of $300, the bill also proposes that local physicians and midwives be trained in the prevention of fistula. Other comprehensive solutions include empowering women by investing in their education, promoting public awareness of the condition to alleviate the social stigma that is attached to the disease, and supporting reintegration and training programs to help those treated return to full and productive lives.
Over the past ten years, the UN Population Fund has supported over 34,000 fistula surgeries, while USAID has facilitated more than 30,000. Although most cases of fistula end with the death of the newborn and the emotional and physical devastation of the mother, luckily in Joy Emmanuel’s case, the story has a happy ending. Her baby survived and she received a free fistula surgery sponsored by USAID. “Before I was embarrassed, but now I am as free as a bird in the air. I have a new life,” she said on Nigeria’s USAID-supported “Health Watch” radio show.
– Nayomi Chibana