Written by Erin Anastasi, Coordinator, Campaign to End Fistula & Technical Specialist at UNFPA in New York, USA and Kevin Nalubwama, fistula survivor, Midwifery student, journalist, Operation Fistula Expert Client Advisor and informal advisor to the Campaign to End Fistula in Kampala, Uganda
Alone, uncertain and afraid, this crisis alienating and isolating them at the very time when they long the most for human presence, the comfort of friends. Not understanding this “enemy”, this scourge that was unheard to them only a short time ago, but now the source of suffering that seems unending. Unsure if they can or will ever work, will ever be a “productive” part of their society, robbed as they are from self-worth and agency.
No, this, for once, is not the profile of a developing-world victim of COVID-19. For millennia, women with obstetric fistula have walked an emotional path similar to the one we all now walk through this awful pandemic. The stigma of fistula causes the ultimate in social distancing; the mystery of the causes and effects of fistula just as real to these women as the confusion the world now faces over a still-incompletely understood corona virus.
Fear, loneliness and desperation was driven home to me recently when I reached out to my colleague and friend, Ms. Kevin Nalubwama (fistula survivor/Midwifery student/journalist/Operation Fistula Expert Client Advisor and informal advisor to the Campaign to End Fistula) to wish her a happy Easter and was shocked to read her panicked, desperate response several days later. She told me that she had had nothing to feed her children except plain black tea for the past week. “Starving is the order of the day, night and week. Sincerely, I’m scared we might starve to death. I’m beginning to lose hope,” she lamented. Like many fistula survivors, Kevin suffered from abject poverty, child marriage, adolescent pregnancy and, later, abandonment. As a single mother raising two children and supporting other fellow fistula survivors, life was quite a struggle, even before Covid-19 hit. But the lockdowns and difficulties imposed by the pandemic exacerbated the multi-layered, intersectional inequalities and vulnerabilities Kevin and others were facing, leading them, quite literally, to the brink of starvation. Thankfully, Operation Fistula intervened and “came to her rescue”, enabling her to feed her children again.
This year’s theme for the International Day to End Obstetric Fistula (23rd May): “End gender inequality! End health inequities! End fistula now” is a call to action to keep alive the visionary aim of the Sustainable Development Goals, which envision a world in which no one is left behind. Yet, with the devastating impact that coming of COVID-19 has had, vulnerable and marginalized individuals, including those suffering from obstetric fistula, are even further left behind and increasingly invisible.
The pandemic has produced damage to the fistula effort as precision-guided as a missile. Obstetric fistula occurs disproportionately among impoverished, vulnerable and marginalized girls and women. Often “invisible” – hidden away and forgotten, these same women and girls are most at risk of dying in childbirth. Those who experience fistula suffer life shattering consequences including chronic incontinence, shame, social isolation, poverty, and physical, mental and emotional health problems. Social and emotional isolation makes it difficult for affected women and girls to maintain sources of income or support, thus deepening their poverty and magnifying their suffering. The “double tragedy” of obstetric fistula – whereby over 90% of women with fistula lose their baby – results from lack of timely access to quality maternity & emergency obstetric care services. These services are deeply threatened as local facilities find themselves ever more completely overwhelmed. Elective surgery has ground to a halt around the world, and fistula repair has been largely curtailed as a result. The world risks increased levels of maternal and newborn mortality and morbidity – especially among the poorest and most marginalized – if essential and life-saving sexual & reproductive health services are disrupted and support diverted in an effort to address the pandemic. The COVID-19 pandemic risks rolling back progress and worsening pre-existing inequalities, exclusion and vulnerabilities. As fistula surgeon and Order of Australia winner Dr. Andrew Browning, Medical Director, Barbara May Foundation, Australia, noted, ”We’ve been hearing from many hospitals that the flow of patients has dramatically decreased. I can only imagine the ‘collateral damage’ that will cause.”
And so, the UNFPA-led Campaign to End Fistula and its member countries & partners face unprecedented challenges as a result of the pandemic. How can we promote safe and accessible maternal/newborn care services – including Midwifery and EmONC – in the face of a tsunami of COVID-19 disease? What is the most ethical approach to balancing the needs of the general population like this one with those of the particularly vulnerable and marginalized women with fistula? How can we rebuild what has been damaged in momentum and capacity for fistula prevention, treatment and care?
More than ever, the Campaign (and similar such programs) need increased, and not diminished levels of support and resources. As highlighted by the WHO, special attention and protections are needed to support the human rights of vulnerable populations during this pandemic. Let’s not forget this fragile, deeply suffering, and amazingly brave and resourceful group of human beings as they navigate their personal disaster within a global catastrophe.
Let us heed the call of The Lancet editor Richard Horton, whose recent “epiphany” reminds us not to allow critical health and human rights issues such as extreme poverty, gender inequality, safe water & sanitation and peace through health to become casualties of this pandemic.
Please note that blog posts are not peer-reviewed and do not necessarily reflect the views of SRHM as an organisation.