From 2007-2013 Engender Health managed the Fistula Care project in partnership with IntraHealth International and supported by USAID. The project worked in ten countries to increase access to fistula repair services, strengthen prevention and reintegration, contribute to the clinical and programmatic evidence base, and enhance the enabling environment for services.
At the end of the project, over 130 participants from 16 countries gathered at the meeting, “Towards a Fistula-Free Generation.” The meeting was held in Kampala, Uganda, in September 2013. Uganda was chosen as the location for the meeting due to the Ministry of Health’s initiative to incorporate fistula guidelines and programming into its sexual and reproductive health services. Uganda was also the setting for other innovative approaches and achievements during the Fistula Care project.
At the Uganda meeting, participants identified lessons learned and needs for action that echo several points of the Manifesto for Maternal Health post-2015, written by MHTF’s director, Ana Langer, and published in the Lancet in February 2013.
Manifesto Point 1: The Urgency of Now
At the Uganda meeting, the Ugandan Minister of Health, the Hon. Dr. Ruhakana Rugunda, presented the Ministry’s vision to reduce maternal morbidity:
- Promote appropriate care-seeking,
- increase the use of skilled care at birth, and
- implement targeted programming to reduce maternal mortality and impact maternal morbidity.
Dr. Rugunda closed his speech asking for a time when girls can grow up, achieve their reproductive intention, and have no need for familiarity with obstetric fistula. Allowing women and girls to languish with morbidity like obstetric fistula or condemning families to live with maternal morbidity can’t be an option. We must act to end preventable morbidity and mortality.
Manifesto Point 3: To Count is to Matter
Dr. Özge Tunçalp, of WHO’s Department of Reproductive Health and Research, provided the keynote address in Uganda on the incidence and prevalence of fistula and discussed the challenges and importance of measurement. Dr. Tunçalp identified the role and importance of strong fistula metrics in both accountability and opportunities for learning. Globally, fistula is a rare event, with the majority of the cases occurring in low-income countries where women lack access to intrapartum care. While we do not have good prevalence and incidence data on fistula, the most frequently cited numbers are that two million women are living with the condition, with about 50,000 to 100,000 new cases annually. However, global estimates such as these are not sufficient for national health systems to plan and allocate national and local resources for prevention, outreach, and treatment services.
Innovative approaches to fistula metrics should be further developed. One way this can be done is triangulating fistula data based on country-specific needs and capacity. At the global level, there is a need for better understanding of the challenges and costs involved in estimating the prevalence and incidence of rare events. We should conduct systematic and critical reviews of available estimation methodologies for obstetric fistula in order to formulate the most valid and reliable method.
Manifesto Point 6: Caring for Most Vulnerable of the Vulnerable
Mary Nell Wegner, the executive director of the Maternal Health Task Force, presented findings from a 2011 consultation on caring for women whose fistulas are deemed incurable. This consultation recommended that stakeholders need to reach a consensus on fistula-related terminology and donors should be asked to fund research to assess social constructs and contextual factors related to fistula. It was also noted that since fistula can be classified as a chronic condition, it could be made reportable within the ICD to capture policymakers’ attention.
Social constructs, lack of family planning services, and unavailability emergency obstetric care put women at risk of obstetric fistula. In addition, efforts should be made to mitigate the use of stigmatizing labels like “untreatable” or “unfixable” among clinicians and policymakers. Fistula, especially for women deemed incurable, can lead to hidden lives sequestered from the wider community. Reaching out to these unseen populations was a priority of the Fistula Care project.
Manifesto Point 9: The Continuum between Maternal and Child Health
The vast majority of women with an obstetric fistula have also experienced a stillbirth or early newborn death. Strengthening maternal health services helps protect the health and well-being of the mother, but it can also prevent intrapartum stillbirths or the deaths of newborns. This is particularly true since the cause of fistula, prolonged and obstructed labor, is strongly linked to perinatal mortality. The Fistula Care project supported facilities to strengthen the continuum of care from antenatal to infant care. When maternal health services are strengthened, both mothers and babies benefit, and families are spared the agony of preventable deaths.
The Fistula Care website provides resources related to these topics, including training manuals, curricula and meeting reports. The Fistula Care Plus project has been awarded to EngenderHealth. With the project’s partners, FC+ will continue to build on these successes.
Interested in writing a blog post on how your country is addressing the prevention and treatment of fistula? Please contact Katie Millar.