Towards a Fistula-Free Future
What is Fistula?
It is estimated that hundreds of thousands of women and girls around the world live with fistula and there are thousands of new cases every year. Fistula is all too common in Africa and Asia, but it is treatable and almost always preventable!
Female genital fistula is a hole that develops between the birth canal and one or more of a woman’s internal organs that causes uncontrollable, constant leakage of urine and/or feces. Fistula can be caused by many things including: several days of obstructed labor without timely medical intervention; surgical error, most often during cesarean section or hysterectomy; or injury, often through sexual violence or accidents. No matter the cause, the impact on women’s lives is vast, often resulting in lasting trauma.
Even with immense strength and courage, the impact of fistula on a woman is life-altering—but there is hope, as EngenderHealth has seen it play out in women’s lives. Fistula is a problem that can be prevented by increasing access to voluntary family planning, delaying early marriage, eliminating poverty and cultural constraints to women’s agency, and providing access to high-quality emergency obstetric care and skilled maternity care. It can be treated by trained surgeons and health clinicians.
The Past 15 Years: A History of Fistula Care
For over 15 years, EngenderHealth has partnered with extraordinary surgeons, staff, facilities, and other partners to: support fistula repairs; train surgeons in fistula surgery and other health clinicians in prevention and treatment related topics; increase access to voluntary family planning counseling and services; and increase access to interventions that effectively manage prolonged labor. This work has transformed the lives of tens of thousands of women and their families in 15 countries and has been made possible with support from The US Agency for International Development (USAID) and other generous donors.
In 2002/2003, EngenderHealth collaborated with UNFPA to assess availability of, and access to, fistula treatment in nine countries. The assessment found a lack of awareness of the causes, symptoms, and treatment options; many missed opportunities to prevent fistula or its recurrence; severely limited access to treatment (surgeons, bedspace, and equipment); limited internationally available clinical or epidemiological data on which to standardize care; and few policies and strategies to address fistula at the national level. To address these challenges together with our many partners, the EngenderHealth-managed USAID Fistula Care and Fistula Care Plus (FC+) projects (2007-2021) focused on the fistula care continuum: prevention, treatment, and reintegration. In that time, much has changed. With appropriate human and financial resources, awareness, knowledge, policies, funding, and strong health systems fistula can become rare for future generations.
To increase awareness of fistula prevention and access to treatment, the project supported its partners to engage with their communities to dispel myths and misconceptions. From Bangladesh to Mozambique, community and religious leaders, community-based organizations, and peer groups of in- and out-of-school youth shared information about fistula prevention, including the importance of birth planning and antenatal care, delaying early marriage, and access to family planning. FC+ worked with Ministries of Health and service providers to strengthen the provision of family planning and maternal healthcare in facilities. The project collaborated to develop tools, job aids, and curricula to support and extend this care. With EngenderHealth’s support, prevention services were offered by more than 1,100 facilities in 15 countries.
Beyond prevention, women with fistula face many barriers to finding facilities that can safely provide treatment including stigma, access to screening and diagnosis, transportation, and trained surgeons. According to Vandana Tripathi, former Director of FC+ and now Director of the MOMENTUM Safe Surgery in Family Planning and Obstetrics project, many barriers to fistula care can be tackled using innovative fistula screening and referral tools like the hotline using interactive voice response (IVR) technology, the 4Q Checklist, and providing transportation vouchers.
To address the severely limited access to fistula care, the project worked to increase capacity by training surgeons, and other staff in fistula surgery including anesthesia, pre-, intra-, and post-operative care. Professor Oladosu Ojengbede, a national and international leader in fistula care, summarized the work that has been done in Nigeria to increase the capacity to provide treatment this way: “Many surgeons have been trained by these national centers, with support from Fistula Care projects and through the FIGO training program. We have worked to ‘unlock the potential’ of the nation’s University Teaching Hospitals where expert surgeons are capable of undertaking the most complex surgeries by making services available free of charge, and to provide training to the next generation of fistula surgeons.”
To improve reintegration for women who face fistula, empowerment and community involvement play a crucial role. Partners like TERREWODE, in Uganda, provide “programs that allow women who have suffered with fistula to heal both physically and emotionally, develop income-generation skills, and successfully reintegrate into family and community life.” They provide services, such as counseling, education, rights training, life skills, entrepreneurship skills, and ongoing social support to encourage reintegration as women heal from the trauma of obstetric fistula.
Since 2005, EngenderHealth has worked alongside communities, partners, and local and national governments to support more than 45,261 fistula repairs for women in 15 countries. Together, they have trained 379 surgeons and 34,827 health workers to prevent and treat fistula; published more than 45 peer reviewed journal articles and more than 20 research, technical, and policy briefs; and offered 1.8 million family planning counseling sessions at supported facilities. This work has also helped support policy changes that tackle the root causes of fistula, including lack of access to family planning and emergency obstetric care.
The most important driver of the work EngenderHealth has done over the years is recognizing and valuing partnership at every level—international, country, regional, public, and private. Partnerships allow us to maximize coordination, contribute knowledge, and ensure that supported activities are informed by current evidence and priorities. Over the past 15 years, EngenderHealth has collaborated with partners in all 15 countries where we worked. USAID has also supported repairs in a 16th country, Tanzania. Partners in these countries have included national governments, civil society organizations, fistula treatment centers, hospitals, and communities.
The Path Forward to End Fistula by 2030
We must prevent new cases while treating the existing backlog of cases to end fistula by 2030. This look back at the past 15 years allows EngenderHealth and its partners to consider a way forward to ensure that this devastating maternal morbidity is not a threat when today’s young girls reach childbearing age. Increasing the access to and quality of fistula services is not only about the number of countries and health facilities supported or fistula surgeries provided. Ultimately, it is about investing in integrated systems that support women’s access to fistula prevention and care, as well as building capacity for healthcare workers and communities to provide that care—focus areas included under the new MOMENTUM Safe Surgery in Family Planning and Obstetrics project, led by EngenderHealth and funded by USAID.
Despite the expansion of fistula prevention and treatment programs in high-burden countries, women with fistula still have inadequate access to timely diagnosis, referral, and repair, compounded by gaps in knowledge, stigma, and other barriers. Fistula is increasingly iatrogenic (caused by surgical error) in many countries, reflecting unsafe Caesarean delivery and hysterectomy and a need for distinct quality improvement and surveillance strategies. MOMENTUM Safe Surgery in Family Planning and Obstetrics supports continued expansion of quality fistula care, including addressing access barriers related to knowledge and stigma, while addressing the drivers of iatrogenic fistula, to advance global targets to end fistula by 2030. The project also supports awareness of, equitable access to, and provision of voluntary family planning surgical services, including long-acting reversible contraception and permanent FP methods.
EngenderHealth invites you to follow along on this path to end fistula by 2030! Follow EngenderHealth’s work through the MOMENTUM Safe Surgery in Family Planning and Obstetrics project on our Twitter, Facebook, LinkedIn, and Instagram accounts. To learn more about the USAID MOMENTUM projects, check out their website, Twitter, Facebook, and LinkedIn.