A wise woman, Judith Campbell, once said, “when your heart speaks, take good notes.” It’s been more than two decades since I met two people who would change my life forever: Dr. Catherine Hamlin, the pioneering founder of the Addis Ababa Fistula Hospital in Ethiopia, and one of her fistula patients, a young woman left incontinent from the unrelieved obstructed labor that also resulted in the death of her baby. Abandoned by her husband, the patient was clearly and understandably depressed. Hamlin simply radiated a palpable love for both her work and her patient. As she talked with gentle determination about how surgery could transform the young woman’s life and those of the 100 or so other women in the ward, she touched the deepest part of my heart.
Just out of graduate school, with not much more than a 10 year-old Honda to my name, I left the hospital that day saying “make it, marry it, or inherit it,” if I ever had money I’d put it there. And in the strange way the universe works – or as a missionary friend would say, “the hand of God,” – I’ve not made, married or inherited money. Instead, I work for a nonprofit, I’m a divorced single mom, and my parents, thankfully, are still alive. But, since 2005, I’ve had the privilege of working full-time to help eradicate fistula in another way, leading Fistula Foundation, a California-based nonprofit that raises funds that help women with fistula get life-changing curative surgery.
Fast forward 12 years and more women are receiving treatment than ever before, thanks to the work of many people in many countries. But, this ancient scourge still decimates the lives of more than a million women, mainly in the worlds’ poorest places.
May 23 marks the fourth International Day to End Obstetric Fistula. Created by the United Nations, the day is a rallying cry to focus the world’s attention on women who are suffering needlessly and help create the political will for sustained action. This seems like a good day to reflect on our progress and share a few things I know for sure about fighting fistula:
1. There are no “silver bullets.”
Vaccines, medications, and new technologies that can be game-changers with other public health problems don’t exist to fight fistula. This is because fistula is really a trauma wound caused by childbirth. Many cases can be complex to treat, patients are often in remote areas, and medical resources in poor countries where fistula is most prevalent are already strained. Fighting fistula is a slog. Those committed to it, those who I admire greatly – MD surgeons, nurses, and advocates – have the tenacity and dedication to stick it out – over decades.
An outreach worker holds a sign about fistula at an Action on Fistula. Photo by Georgina Goodwin
2. The true north: well-trained African and Asian doctors.
Rigorous training for African and Asian surgeons that prepares them to handle increasingly complex cases of fistula and that enables them to know when to refer a patient with fistula too complicated for their level of ability is crucial. A trained surgeon, humble to what they can and can’t do well, is a woman’s best hope at a cure; an arrogant, poorly trained or over-confident surgeon her worst enemy. The International Federation of Gynecology and Obstetrics (FIGO) developed a path-breaking program five years ago, doing the vital work of training the next generation of fistula surgeons; they only train MDs committed to staying in Africa and Asia to do surgeries with competency-based training, not the old “see one, do one, teach one” approach. Fistula Foundation is proud to be the major funder.
Dr. Hillary Mabeya prepares for fistula surgery in Eldoret, Kenya. Image by Georgina Goodwin
3. NGOs can’t do it alone.
Multi-lateral organizations, specifically the United Nations, play a critical role in advancing a global campaign to end fistula, and large bi-lateral funders like USAID, working with EngenderHealth, provide critical research and evaluation tools that are beyond the means of NGOs like ours who do not take government money. Similarly, health ministries and corporate funders, like Johnson & Johnson and Astellas Pharma, supply resources and reach that are indispensable.
4. No patient was cured in an office in San Jose, New York, London, Paris or Geneva.
Money to fight fistula is both finite and inadequate and should be directed toward programs in African and Asia. I know, it sounds obvious. But, there is an uncomfortable reality: many Europeans and Americans want to help fight fistula, but few of us with the ability to do so want to leave our home countries permanently and live in the affected communities in Africa or Asia. We’ve got to police ourselves to ensure our focus is always on getting resources where the women need help; that’s not here in Silicon Valley.
5. Patient Outreach is critical: a “Field of Dreams” strategy doesn’t work.
“Build it and they will come” may work in a movie about baseball, but it doesn’t work for fistula treatment. Outreach programs to help women with fistula understand treatment availability and access are vital. Without effective outreach, good treatment programs will go wanting for patients, while, perversely, patients want for treatment.
6. Generous hearts can help transform lives.
Caring people are everywhere. Our largest donor ever was a retired public school teacher from New York; another incredible woman put her $35,000 settlement from a workplace gender discrimination lawsuit toward funding fistula surgery; and a caring man in Manhattan provided critical support to rebuild an earthquake damaged hospital so fistula patients could continue to get treatment in Nepal. I could share countless stories of people giving amounts large and small to help women they will never meet, in places they will never visit. Our small organization has raised more than $60 million in the last dozen years with donors in more than sixty countries and our little engine that could gets stronger every year.
7. Some of the greatest champions for women with fistula are famous men.
Nick Kristof, Louis CK, Peter Singer and his “The Life You Can Save” crew, and Paul Simon, have done more to open hearts, minds and wallets than a boatload of people like me. We love them and wish there were more of them!
Louis CK wears a Fistula Foundation t-shirt while hosting Saturday Night Live in April, 2017. Photo by Will Heath/NBC
8. African and Asian health providers deserve profound respect and support.
Most African and Asian doctors who treat fistula patients could easily make more money by exclusively treating wealthy patients in their own countries or migrating to the Middle East, Europe or North America. Those that instead devote their lives to treating women who are often the poorest of the poor deserve both resources and respect.
9. The way forward is integrated country programs that combine treatment, outreach, capacity building and surgeon training, creating true treatment networks.
Over the past three years, with the critical help of Astellas Pharma Europe, we piloted a program just like this in Kenya, called Action on Fistula. It’s linked six hospitals providing full-time fistula treatment, covered a majority of the country with effective and innovative outreach programs, trained new surgeons through the FIGO program, and built a center of excellence for both training and treatment. With our Kenyan partners, we’ve created the human and physical infrastructure to treat women long into the future. In just three years, we’ve treated more than 2,500 women, and the largest numbers have come in recent months. You can read more about it on our website or on the Astellas Pharma Europe website.
At least a million women suffer for want of surgery that can very often transform their lives. But, thanks to the path forged by Dr. Hamlin and her late husband decades ago for others of us to follow, more women are getting treatment than ever before, and the expanding group of organizations and individuals dedicated to ending fistula in our lifetimes gives me hope that this just might happen.
