Action on Fistula is increasing treatment capacity and training surgeons to aid fistula patients
Launched in 2014, the Fistula Foundation’s Action on Fistula set out to transform the lives of women in Kenya living with fistula: an injury caused by prolonged obstructed labor. Supported by a grant from Astellas Pharma Europe Ltd., the program has already treated more than double the number of women it initially set out to help and recently entered its second phase with a goal of treating 4,500 women by 2020. Action on Fistula is a flagship program of Access Accelerated, a multi-stakeholder collaboration focused on improving non-communicable disease prevention, diagnosis and treatment, consisting of multiple pharmaceutical companies including Astellas, as well as the World Bank Group and the Union for International Cancer Control.
Astellas sat down with Kate Grant, CEO of the Fistula Foundation, to learn more about Action on Fistula and to hear from those who have been helped by the program.
What is Action on Fistula and what have its achievements been since launch?
The Fistula Foundation set out to transform the lives of more than 1,200 women in Kenya living with fistula which can lead to fecal or urinary incontinence or both. Alongside significant physical suffering, one of the toughest aspects of fistula is stigma. Tragically, a woman with fistula is often rejected by her husband and pushed out of her village to live in isolation.
We’re delighted the program has been an unprecedented success: over 2,500 women with fistula have received life-changing reconstructive surgery and it’s doubled the capacity to conduct fistula surgeries in Kenya. The grant from Astellas has enabled us to truly transform the fistula landscape, building a solid network for fistula treatment in Kenya that we believe will mean more women receive life changing fistula repair surgery for years to come.
There are now six hospitals in Kenya treating women 12 months of the year, and fistula sufferers from 43 of Kenya’s 47 counties have received treatment.
Why was Action on Fistula created?
There are an estimated one million cases of fistula globally. It most commonly occurs among women who live in low-resource countries, who give birth without access to medical help. Many women who develop fistula live in rural communities and are not aware help is available or are unable to reach treatment.
In Kenya, fistula is a significant issue: The United Nations Population Fund has estimated 3,000 new cases of fistula occur annually and only 7.5% of women with fistula in Kenya are able to access treatment, creating as many as 30,000 backlogged cases.
The Foundation’s strategy was to tackle this by building in-country capacity to recognize and treat women, through a nationwide Fistula Treatment Network. We developed a comprehensive plan to train more fistula surgeons, extend access to services and build a stakeholder outreach program which educates communities about fistula, identifies patients and brings them in for treatment.
Phase II of Action on Fistula has begun – what does the future hold for the program?
At the Foundation, we are really excited about this next phase of the program. Over the next three years, Action on Fistula will leverage the strength of the fistula treatment network we’ve built, enabling us to do a huge amount to change the landscape of fistula in Kenya and providing surgeries to an additional 2,000 women.
We’re also going to continue to expand the infrastructure. To do this, we’ll extend the network so it has eight treatment centers and establish 20 support groups throughout Kenya to provide recovering fistula patients with psychosocial assistance, economic empowerment and income-generating activities.
Additionally, we’ll train six new surgeons at the Gynocare Women’s and Fistula Hospital in Kenya as well as train 10 fistula nurses to support women through their treatment journey. As we have been able to certify this facility as Kenya’s first and only hospital to be recognized by the International Federation of Gynecology and Obstetrics as a fistula surgeon training site, we’re also pleased to be able to extend training opportunities to African and Asian surgeons based outside of Kenya. This will help to increase surgical capacity across sub-Saharan Africa and South-East Asia, ensuring more women in more places have access to care from highly trained surgeons.
Spotlight on Women Who’ve Been Helped
Pregnant at the age of 13, Elizabeth was in labor for two days before delivering a stillborn baby. She developed obstetric fistula, which led to two decades of shame and sadness. She suffered alone until learning that treatment was available through the Action on Fistula program.
“Days, weeks, months and eventually years went by without any sign that things were to get back to normal again. I felt confused. My dreams of going back to school were shattered completely, and I felt left in darkness about my condition because I didn’t know what was happening.
“I could no longer go out and socialize. I became the talk of our village, I tried to marry but it never worked because immediately they learned about my condition. Then they left, and I never saw them again.”
“I had lost hope until I heard an announcement over the radio about fistula treatment,” Elizabeth said.
Following a healthy pregnancy, Evelyn was left in labor for 24 hours before being referred to a unit for a Cesarean procedure. Sadly, Evelyn lost her baby and suffered an obstetric fistula, enduring three months of pain, shame and isolation, before finally being treated by the Action on Fistula program.
“It was so painful to leave the hospital with the few clothes I had bought for my baby. Painful to walk out of the gates without my baby, made worse by me leaking urine. I went from a life of dignity to a life of shame.”
“The three months I lived with fistula seemed like three decades. I will be forever grateful to Action on Fistula for the new life it has given me. I can now go back to my husband a woman again.”
Betty endured the trauma of losing her child at birth after a week of painful labour. Then, after she noticed the leaking of urine, doctors discovered she had an obstetric fistula. The condition left Betty feeling isolated and a burden to her mother. However, following corrective surgery provided by the Action on Fistula program, Betty now feels hopeful that her dignity and quality of life can be restored.
“My mother assumed I was experiencing false labor, but I was in constant pain for one week. When we realized something was wrong we sought help, but it was too late. The doctors told me that my baby had died.”
“Having this surgery has helped to restore my dignity and bring an end to a life of isolation. It has let me help my mother, and I no longer feel like a burden.”