Action on Fistula: An Innovative Program to End Obstetric Fistula

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KENYA — Gladys, a 26 years old mother of two, felt helpless after the labor and birth of her second child in 2014 lead to obstetric fistula. She was neglected and shunned by everyone, including her own husband who abandoned her, because of her incontinence and odor. Finally, after more than two years of hopelessness, she heard a radio announcement for an outreach group. She contacted a hotline, was referred to a hospital and had her fistula repair surgery in July 2016. Since her surgery, she has started a small business selling bananas as a healed and happy woman.

Obstetric fistula is a neglected and preventable condition that could happen to anyone without proper medical care. At least one million women suffer from untreated obstetric fistula. It is estimated that when one woman goes for treatment, 50 go without.

What is Obstetric Fistula?

Fistula Foundation defines obstetric fistula as a “hole between the vagina and rectum or bladder that is caused by prolonged obstructed labor, leaving a woman incontinent of urine or feces or both.” This condition typically happens to women living in rural areas with little or no medical help during labor.

When giving birth, a woman’s labor may become obstructed, sometimes for days, until the baby is removed. The constant pressure of the fetus can create a small hole and forever change her life.

Reversing obstetric fistula can be challenging. Repair operations require skilled surgeons, operating rooms, equipment and funding. Preventing obstetric fistula requires education and improved medical care.

Action on Fistula

In 2014, however, Fistula Foundation, with a generous donation from Astellas Pharma EMEA, developed and launched a successful program called Action on Fistula. It is the first comprehensive campaign of its kind that focuses on communication, community outreach and a national network of treatment facilities. The goal of Action on Fistula is to increase access to treatment, build a long term capacity for doctors to perform surgery and create long term sustainability for the communities.

Through networking, outreach and communication, Action on Fistula addresses necessary and important elements needed to properly treat fistula.

The first element is the patients. Patients can be particularly difficult to locate. Women with obstetric fistula typically live in rural areas, far from hospitals or transportation. They are stigmatized and shunned by their communities and families because of the leaking and odor. Most of these women do not realize that obstetric fistula is a treatable condition and that they are not alone. Because the baby does not usually survive the prolonged obstructed labor, many women believe that they are forever cursed with fistula.

To help and locate women, Action on Fistula works with outreach partners to grow networks and find women with obstetric fistula. Outreach groups travel to rural areas and teach women, men and families about the condition. Since 2014, these groups have reached 515,000 people. Ninety percent of the patients treated since the launch of the program have found treatment because of outreach.

The next element is the surgeons. The global demand far outweighs the supply of properly trained fistula surgeons. Skill and experience are especially important in complicated cases. If the surgeon’s training does not match the complexity of the fistula, surgery can worsen the condition.

To increase and improve the supply of surgeons, Action on Fistula successfully trained six Kenyan surgeons during the last three years. One surgeon continued on to open a treatment facility in a remote part of Kenya with no previous relief for obstetric fistula. Additionally, increased networking through Action on Fistula helps surgeons exchange stories and experiences and build relationships.

Hospital facilities are the final element. Before Action on Fistula, only two hospitals in Kenya did routine fistula treatment, a problem for women living in remote areas. With no communication or network between hospitals, women were not referred to other facilities for more advanced treatment.

Action on Fistula developed a nationwide telephone hotline, allowing women to be screened on the phone and referred to a local facility for a physical examination. The growing hospital network allows women to be referred to another facility that can best treat her level of fistula. This approach reduces traveling distance and makes treatment more manageable for women and families.

Fistula Foundation originally hoped to treat 1,200 women over three years through Action on Fistula. The nonprofit’s program has far surpassed this goal, having helped treat 2,658 women to date.

Lindsey Pollaczek, senior program director for Action on Fistula and Fistula Foundation, believes that the “output [of the program]makes a huge difference for such a small input.” The surgery cost is affordable by U.S. standards and has the ability to shape and improve the lives of women who had not realized the possibilities.

The program is entering its second phase, which involves turning management over to the local team. The plan is to increase the number of treated women to 4,500 over the next three years and to develop a better exit strategy for women in terms of social reintegration and job training.

Leading Example

If this networking approach works, Fistula Foundation will continue to replicate the program. The organization is now examining the pros and cons of Action in Fistula in Kenya in order to develop a similar program in Zambia with the support of Johnson & Johnson. This path forward is revolutionary for women with fistula and can minimize the impact of the condition and perhaps even end the problem permanently.

Francesca Montalto

Photo: Georgina Goodwin for the Fistula Foundation

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