Originally authored by Bianca Devoto for the USAID Impact Blog.
A few months after becoming pregnant with her first child, Edisa’s husband unexpectedly passed away. In need of transportation to reach the closest health facility, and without family nearby, Edisa went into labor at home.
Friends and neighbors contributed money for her transportation to a local hospital, but without enough money for treatment, she labored without medical attention for two days. On Edisa’s third day at the hospital, the staff finally attended her. The child did not survive the prolonged labor.
Edisa returned to her community without a baby, but with a devastating obstetric fistula—an injury caused by prolonged labor and results in a hole between the birth canal and one or more of a woman’s internal organs. The outcome is chronic, uncontrollable leakage of urine and/or feces.
While Edisa was recovering, a neighbor told her that she, too, had the problem of leaking urine after giving birth. She encouraged Edisa to visit Kitovu Hospital, a facility that provides fistula repair surgeries through USAID-supported hospital in Uganda.
Again, Edisa found herself unable to access the care she needed due to financial constraints. Borrowing from friends, Edisa collected enough money for transportation to the hospital located 11 hours away from her home. In Uganda, women can spend up to $25 on one-way transportation costs for two people to a fistula repair facility.
After receiving fistula repair surgery the USAID-supported hospital, Edisa is now completely healed and looking forward to her future. But for the more than 2 million women in sub-Saharan Africa and Asia that are estimated to be living with fistula, the costs of care can be insurmountable, leaving them to go untreated.
Despite increased availability of often free fistula repair in Uganda, women like Edisa can still lack access to this critical treatment.
Because of the factors that can result in an obstetric fistula, including difficulties with transportation to health facilities and lack of quality health services, this injury has a greater impact on women living in poverty. Women living with fistula typically live in impoverished, remote settings with limited access to facilities that provide fistula surgeries.
Women at a USAID-supported fistula repair clinic. / Fistula Care Plus
A recently published USAID-supported research study sought to better understand the barriers women face when seeking fistula care. From June to December 2015, a research team conducted interviews and focus groups in Nigeria and Uganda with women affected by fistula, women’s families and spouses, and fistula care health providers
The study found that women face financial barriers when seeking fistula repair surgery, including loss of income and transportation expenses. In addition to direct medical expenses for fistula care, women also face the costs for food and water during their recovery period at the facility as well as costs to hire child care or employees to manage their businesses.
Pooja Sripad, study co-author and associate at Population Council, says that the research team sought to look at the cost and transport involved in fistula repair “more holistically.” She further explained the research team’s surprise at the wide range of barriers reported and how these barriers limit women’s “own agency to seek treatment.”
Due to the complex nature of fistulas and poor quality of care, women often have to receive multiple surgeries and visit different surgical facilities. That also increases transportation and surgical costs.
Mothers waiting in a clinic in Nigeria. / USAID
Dr. Mark Shrime, director of the Center for Global Surgery Evaluation at the Massachusetts Eye and Ear Infirmary and Harvard Medical School, says that the results are “yet another example in a growing body of literature showing that the ‘non-medical’ costs of care—things like transportation, food and lodging—are huge sources of catastrophic expense for surgical patients. Most of our health policies, if they look at financial risk at all and most don’t look only at the risk patients face when getting the surgery itself, but this paper demonstrates how ‘free’ surgery is rarely actually free.”
“The implications are pretty evident,” he added, “to deliver truly equitable, quality surgical care, we need to broaden our definition of ‘health’ to include the financial state we leave patients in after we’re done treating them.”
USAID is using this study to improve care for women with fistula. In Nigeria and Uganda, USAID has piloted a groundbreaking intervention that addresses these barriers and will transform how women like Edisa access care.
Women at Kyenjojo Hospital, Uganda. / Amy Fowler, USAID
After enduring six months of leaking and leg pain, Edisa is taking control of her life, empowering other women to seek treatment through interventions like those provided by USAID that address the central barriers to seeking fistula repair surgery.
Before departing for Kitovu Hospital, women in her village who also suffer from fistula were hesitant to seek treatment. For many women with fistula, the emotional costs of returning home without relief is yet another hidden cost of fistula repair.
“They told me that if I got cured, that they would also come. Now, they will come,” says Edisa.
Since 2004, more than 50,000 fistula repair surgeries have been made possible all over the world through Fistula Care Plus Project and other USAID-supported fistula care projects.
ABOUT THE AUTHOR
Bianca Devoto is an intern in USAID’s Office of Population & Reproductive Health supporting USAID’s management team for the Fistula Care Plus project.