National surveillance system Asia and Pacific
From fistula survivor to global advocate
Bangladesh and Nepal are revolutionizing the response to obstetric fistula
Kenya, One By One
as they prepare to address a vital but often overlooked component of fistula programmes—the early identification of women living with fistula
With a maternal death ratio of 530 deaths per 100,000 live births, Kenya
so that treatment can be provided as soon as possible.
struggles with disabilities associated with childbirth, like fistula. Of the 3,000
An innovative national surveillance system is being planned to facilitate fistula management, as well as develop and strengthen the capacity of obstetricians and other health professionals on issues related to fistula prevention and treatment in both countries. The system is expected to be put in place in 2012 as a pilot project in selected districts of Nepal and also in Bangladesh, where the minister of
new cases that occur each year, only approximately 7 per cent are able to access treatment. Sarah Omega is one of the fortunate ones. “I lived with fistula for twelve years and the reason that I lived with it for that long was because I didn’t have information about treatment in Kenya,” said the fistula survivor and advocate. Ms. Omega is an example of courage and resilience. After surviving the
Health and Family Welfare, Dr. Mujibor Rahman Fakir, is a strong supporter
ordeal of fistula and regaining her place in society, she became an advocate
of the initiative: “If we can ensure safe delivery and safe motherhood, one
for the Campaign to End Fistula and is now Outreach Manager in Western
day obstetric fistula will be history.”
Kenya for One By One’s Let’s End Fistula initiative.
The system will use community midwives and primary health care
“Because I know what it feels like, a woman leaking urine, the trauma
workers to establish a vital link between the public health sector and
that is attached to the condition... I decided I’ll not just sit back and let
private practitioners, including obstetricians, gynecologists and urologists.
other women suffer in silence, just the way I suffered in silence,” she added.
“The practitioners are key elements of the system,” explains Dr. Vinit Sharma, UNFPA regional advisor for reproductive health. The backbone of the system is composed of reporting units—
Through One By One, a U.S.-based non-profit dedicated to the eradication of obstetric fistula, Sarah Omega is working very closely with communities and local leaders to raise awareness about the importance of
community midwives, practitioners, hospitals and other health facilities
preventing fistula, ensuring access to free treatment, and ending the stigma
in the government and the private sector— that are likely to see cases
associated with the condition.
of obstetric fistula. They will be required to submit monthly reports, even if no cases are
Sarah is training and supervising a network of fellow fistula survivors and community volunteers, men and women, to educate their own communities
identified in the period. “This serves as a cross-check to ensure that all
about fistula, find and bring fistula patients in for care, and provide reintegra-
identified fistula cases are being reported,” explains Dr. Sharma.
tion support for women when they return home following treatment.
Notifications work as an alarm: When a new fistula case is detected,
To tell fistula experts from around the world about their experience
it has to be immediately communicated to the district health officer.
with Let’s End Fistula in Kenya and to help steer the fistula agenda
All cases must be immediately investigated, usually within 72 hours of
forward, Sarah Omega and one of her first trainees, Norah Otondo, were
notification.
invited to participate in the annual meeting of the International Obstetric
A trained medical officer is then sent to examine the fistula survivor at her place of residence and collect her medical history. If the diagnosis is confirmed, the patient is referred to a fistula centre for treatment. The district health officer is responsible for making arrangements
Fistula Working Group, in Mozambique. “It was the first time that fistula survivors actively participated in this forum, attesting not only to their own capacity and total reintegration into society, but, more impor-
regarding surgery, post operative care, rehabilitation and social re-integra-
tantly, showing the international
tion. The area must also be searched for other unreported cases, but each
recognition of the role of fistula
case identified and referred for treatment is in itself a victory.
survivors as advocates,” said Ms.
“If you cure one obstetric fistula case, you have given meaning of life to someone who unfortunately has lost it due to social injustice and health system failure,” explains Dr. Pushpa Chaudhary, president-elect of the Nepal Society of Obstetricians and Gynaecologists. Using geographic information, the national data management team
Gillian Slinger, coordinator of the Campaign to End Fistula. “Former fistula patients have a deep understanding of how to work effectively with other fistula
will map the location of the cases in the actual district where the case
patients and their families. They
occurred, so that appropriate action can be planned and other unidentified
are in a unique position to have a
cases may also be discovered and referred for appropriate treatment.
very powerful impact, and we are
International experts agree about the importance of putting such
already seeing incredible progress
systems in place. According to Dr. Tom Raassen, of the International
in Western Kenya,” complemented
Society of Obstetric Fistula Surgeons, “to plan surveillance of women with
Heidi Breeze-Harris, co-founder
obstetric fistulas is a great opportunity to find those women at the earliest
and executive director of One
possible moment, before they have become social outcasts.”
By One.
Sarah Omega, fistula survivor and advocate. Photo: Benedicte Desrus, Sipa Press, 2011.
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