Fistula FREE Madagascar

Seth Cochran is the Founder & CEO of Operation Fistula, an organization working to end obstetric fistula for every woman, everywhere. An engineer by training, Seth’s early projects drove significant revenue for large businesses, setting a path for him in the corporate world. Within a decade, though, his attention had turned to a different set of challenges – ones that aligned with a deep-held interest in addressing societal injustice. In 2008, Seth quit his job to focus full-time on obstetric fistula, a public health problem that was deeply neglected, yet undeniably important and solvable at scale. Elements that brought his background and education together with his passions. Since then, Seth and Operation Fistula have been dedicated to driving change and innovation in the sector, keeping people at the center of a data-driven approach. Seth’s vision is a cross-continental collaboration that delivers a fistula-free world by 2030.

Our mission is to end obstetric fistula for every woman, everywhere.
 
Fistula work is underfunded and lacking coordination. The $26m spent annually to treat fistula serves 16,000 women, but the estimated annual incidence is 25,000. Each year 9,000 more women are added to the backlog of 1 million untreated cases.
 
Our project works across the whole continuum-of-care to find, identify, mobilize, treat, and socially reintegrate all the women living with fistula in 2 regions of Madagascar. We are the only organization working to deliver a model that clears geographical areas of fistula, making them fistula free.
 
Fistula only happens in places where systems fail women and girls. Our project elevates humanity by addressing this failure with a holistic, sustainable, and scalable model for impact. Driven by data, we seek to revolutionize our sector, harness partnerships, and deliver collective action to both end fistula and the gender inequality that causes it. 

We describe obstetric fistula as “the worst thing you’ve never heard of,” because so many people – even in areas where it’s prevalent – don’t understand what is it or why it happens, and they don’t talk about it because it’s taboo, or embarrassing. Obstetric fistula is a childbirth injury that happens when a woman can’t access the medical help she needs while in labor (C-section). In 90% of cases, a labor that causes fistula also ends in stillbirth. Fistula leaves women uncontrollably leaking urine and/or feces. This has dire medical and social consequences.

Though the condition is little-known, globally there are 1 million women living with fistula. In Madagascar the estimated number of women with fistula is 50,000. There, OpFistula is working to end fistula in 2 regions of the country. The problems we face in the work are: women living with fistula are exceptionally hard to reach, and no organization has successfully ended fistula in a place; fistula is underfunded – seen as a low-priority symptom of systemic failure – and resources don’t reach the people who need them; the sector is stymied by lack of collaboration, and there’s very poor data to support and inform the work. 

Our project is designed to deliver a scalable model that addresses the complex barriers to care faced by women with fistula in Madagascar, and address the problems that limit global progress (described above).
 
Our project delivers an end-to-end model of care to serve women living with fistula in the 2 regions – we seek to find, mobilize, and treat every single woman living with fistula in these geographies. Rather than focusing on the number of fistula cases treated as the measure of progress, we seek to answer the question: How do you make a place fistula-free? Our project delivers an answer in the form of four key target results:
 

1. Every woman with fistula can access quality and complete care.
2. Any new case of fistula is treated within 6-months.
3. People understand that fistula is a treatable injury, and not a curse.
4. Data and technology are used to comprehensively address the causes of fistula.

 
Our ultimate goal is for partners and governments to replicate our project at scale, so that we can truly reach, heal, and nurture every woman, everywhere. What we learn in Madagascar will have the power to transform the way organizations work to end fistula globally.

Women with fistula experience unimaginable suffering. The constant stream of urine and/or feces leads to infections, “foot drop”, kidney problems, and other medical co-morbidities. The overwhelming smell of waste emanating from these women, leads communities to shun, shame, and ostracize them. Women living with fistula, therefore, often hide from human contact, and live in extreme isolation.
 
OpFistula has worked in Madagascar since 2013 and has learned a huge amount from patients about their needs, and the barriers to care they face. As a sector, the focus has been the surgical intervention step of the patient journey. But, every other element of community engagement, outreach, patient mobilization, and social reintegration, lag behind. Our project is changing that. We are working across the whole patient journey to better understand and address patient needs, while also delivering a comprehensive, holistic, data-driven effort to end fistula in 2 regions. This has never been done before.
 
We are also engaging ‘patient ambassadors’ across this project. These former patients will encourage women to seek care, accompany them on their treatment journey, and help with reintegration. No one has more power in our program effort than women who have been through the experience of fistula treatment themselves.

Obstetric fistula only happens in places where systems fail women and girls. Its existence is an indicator of systemic gender inequality. Women with fistula are shunned, ignored, and unserved. Our project addresses these systemic failures by conducting mass community outreach and awareness raising, providing radically open and accessible treatment services at zero cost to the patient (we account for every cost on the journey, including transport, food, loss of wages, etc.), and we deliver social service and reintegration support to ensure patient success and community acceptance. In this way, we address elements of each and every dimension in our project.

In September 2015, I traveled to Madagascar to meet Dr. Ihanta, the Director General of Madagascar’s Ministry of Health. I had no appointment, but our pilot program to provide unrestricted, data-driven funding direct to fistula surgeons had grown the country’s treatment numbers by 10x in just 2 years. Through the UNFPA, I knew she cared about fistula and wanted to see what we could do together to end fistula in Madagascar. 

I waited several days and when I finally got to see her, she refused to talk about the project. Instead, she asked questions about my family and motivations. She asked me to come back the next day and tell her about our work. 

The next day was electric! Ihanta delved deep into what we did, why funding the point of care was so catalytic, and how we could end fistula. After several hours, she suggested that we go to see the Minister. He believed our model could show a way to fund universal health coverage and wanted to collaborate. We returned immediately to Ihanta’s office. She cleared her day and we spent it sketching out the project, and drafting an MOU that the Minister signed two days later

I was 5. There was a metal bar between my ankles and another bar between my knees. The braces kept my legs locked and spread wide apart. To walk, I would throw one leg forward and pivot the other leg around. The constant cruelty of children left me completely alone.
 
Athleticism replaced the disability of my youth. It helped me get a great education. After Cornell, I made investors $1B by helping transform the networking cable industry. When career success left me unfulfilled, I searched for inspiration.
 
Reading about Selma inspired me. I was moved by their passion, and wanted to devote my life to fighting gross injustice. The first time I learned about fistula, I decided to go all in. Fistula is where disability collides with racial injustice.

The disability is social, economic, and physical, and it nearly exclusively affects women with brown skin. Perhaps that is why nearly every woman who gets this terrible injury will never know its affordable cure. That is unacceptable to me. 

Empathy drives my passion. Why should people suffer so immensely when we can stop it? Fistula is a gross injustice that we can address.

Ending fistula requires the collective action of a variety of diverse actors. Several factors make me well positioned to deliver this.
 
I have a clear vision of where we need to focus. My experience shows that I can drive this vision across a large, multi-cultural group.
 
As a leader, I have developed a highly results-oriented staff that are engaged with, and can motivate the community of actors, into action.
 
I am a collaborative consensus builder who works well with partners. I try to build a broad set of relationships and do my very best to make every stakeholder feel they’re essential.
 
Synthesis is my strongest skill and I seek input from many sources to expand and improve our opportunities to realize the vision. We want to understand every path to success and be ready to pursue any of them.
 
I am a strong and comfortable public speaker and can persuasively mobilize resources and commitment for our mission.
 
I understand the complex political environment and competing agendas in our sector. This understanding is essential to determining the timing and mix of certain actions.
 
I am a steward of this mission. My job is not to be the hero, but to empower 1,000 heroes.
 
Finally, and most importantly, I will not stop until we end fistula for every woman, everywhere. This all-encompassing commitment has carried me through 12 years of challenges and will carry me through all the adversity to come.

In 2017, I secured enough funding to support the growth of OpFistula and form a team. 

The first year of our project to end fistula in Madagascar focused on developing clinical capacity. For years we had never had trouble finding patients. But as we started the project, finding patients proved nearly impossible. We tried everything, but could only get 45 of the 150 patients we expected. We successfully achieved all our other project goals, but knew we had to develop a solution to find and reach more patients.  

This experience taught us that the better we do, the harder it gets. It also showed us that separating the clinical and community work made no sense.  Finally, we learned that our remote funding model required local context to find hard to reach women.  

In 2019, we secured funding from Grand Challenges Canada and used the support to hire local leadership and management, and shift our center of gravity from London to Antananarivo. In just 6 months we built a Malagasy organization with over 60 staff, working deeply in the hardest to reach communities.  

We now find more patients than existing capacity can treat and are fundraising to help us expand capacity.

As we settled into the new COVID paradigm, we wondered how we could plan when the future was so uncertain? We needed some boundaries for the boundless future we had before us.  The idea was to give the team a clear way they could contribute to how we navigate the new paradigm. After a conversation with Kevin Starr, I introduced the concept of Survive / Maintain / Respond and asked the team for ideas.
 
Survive is managing cash. It is ensuring all expenses are essential and contribute to long-term viability. Maintain is keeping the work moving. It is keeping progress accelerating in new ways. It means rethinking everything with a focus on sustaining forward motion for the mission. Respond is finding ways to transform the mission by using our unique skills to help others survive or thrive within the new paradigm.  
 
We have extended our funding runway by 5 months by rethinking cost (survive), transformed into a virtual organization in London and Madagascar where we are increasing community outreach in areas unaffected by COVID (maintain), and provided our technical expertise to plan out a gender-based violence crisis line for the government of Haiti (respond).

This proposed collaboration is innovative and unique for two primary reasons. First, this collaboration will empower a far reaching, patient-centered effort to end obstetric fistula in targeted and diverse areas. No one has ever been able to confirm a geographical area fistula free, and our project could do this! Second, as part of our work to create the first fistula free areas, we will be collecting and harnessing the power of data across every element of the patient journey. This will result in an unprecedented volume of extensive, geospatial, individually disaggregated data that could help to improve fistula care, prevalence estimates, and map the gender inequality that causes fistula.  

Every element of our project engages cutting-edge data tools and technology to drive program outcomes and impact. We use CommCare to collect data through every step of the patient journey and have assembled several innovative business intelligence tools like Alteryx, Exasol, Mapbox and Tableau, to process, store, and visualize this case management data. There is no other social impact organization working to end fistula that has such a deep commitment to data-driven and informed practice, and such advanced skills and abilities in the use and implementation of these technologies at scale.

Goals for the next 5 years: 

• End fistula in 5 regions of Madagascar - We will find, mobilize, and treat every woman with fistula in 5 regions, by scaling up our effort from the 2 regions - SAVA and Vatovavy-Fitovinany - to these additional regional geographies. Adding 3 additional regions, and delivering a comprehensive implementation across 5 region-level geographies, clearing each of fistula, presents a significant transition to scale. 
• Scale and strengthen our Madagascar team and organization - We currently have a total team of 76 people, and will need to scale this to a team of at least 200 people, to drive impact across the additional region-level geographies of the country. 
• Raise $7.5 Million for the work - to deliver our work at scale we will need to raise at least $7.5 Million. This funding will support the continued growth of our Madagascar team and organization, and support the scale into the regional additional geographies. It will also fund expansion of “Fistula FREE Madagascar” into 5 more countries. 
• Scale Fistula FREE to 5 more countries - We will implement “Fistula FREE Madagascar” pilots in five additional countries, building up local teams and infrastructure to deliver the work at scale, in partnership with UNFPA and government, as well as other fistula sector partners.

For this project:

Implementation Partners:

• The Government of Madagascar is our national scale partner
• UNFPA is our global scale partner
• Freedom From Fistula Foundation is helping us handle complicated cases as a referral partner
• Baylor College of Medicine - where I am on faculty - is our research partner
• WHO has a national and global surveillance network that can help identify patients
• FIGO can help us train surgeons and nurses

Funding Partners:

• Grand Challenges Canada is our 2020 Transition to Scale partner
• Bill & Melinda Gates Foundation is our tech-innovation for collaboration partner
• Tableau Foundation is our technology partner
• Child Relief International is helping us with administration and operations

Our 2020 fiscal year budget is $1.2M, but a great deal of this relates to the implementation of this project with Grand Challenges Canada (GCC) funding. GCC have offered flexibility on the project timeline because of disruption caused by COVID-19. We are likely to get a no-cost extension into 2021, which would reduce the budget for 2020, but we are currently in the no-cost extension process, so are sharing the picture of our current budget and plans.

The Elevate Prize would have a transformative impact on our capacity to address many of the barriers we face: 

• Fistula is underfunded and seen as a low-priority symptom - With your support, we would be able to extend the existing capacity for fistula treatment by funding more surgeons, and we’d also be able to run a targeted media and marketing campaign to raise awareness of fistula, and use that to mobilize attention and resources. 
• Women living with fistula are exceptionally hard to reach, and no organization has successfully ended fistula in a place - With access to your network, we would be able to connect with other organizations working on similar social impact interventions. We know that no single organization can achieve lasting social impact alone, and are always looking to listen and learn from others.
• The sector is stymied by lack of collaboration, and there’s very poor data to support and inform the work - The Elevate Prize would offer us a unique opportunity to work with other data-driven organizations to amplify our project impact and work. The profile of the Elevate Prize could enable us to attract more partners and collaborators for the our work as we scale. 

The Elevate Prize also presents the chance to access mentorship and coaching. As a Founder & CEO of a social enterprise it can be challenging to access resources like this, and my experience as a Mulago Fellow taught me that the impact of this capacity building is impossible to overstate!