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Restoring dignity and hope – Kenya’s fight against fistula

By Laura Hedges

8 November 2017
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When you work in social change communications, you can sometimes feel a long way from the actual social change. Recently Laura Hedges, a senior consultant at Forster Communications, got the chance to experience first-hand the impact of the campaign she helped to develop and implement for Astellas Pharma Europe, a campaign that is tackling one of the most difficult health issues faced by women in countries like Kenya.

Joyce has endured unimaginable trauma. After giving birth to her fifth child in rural Kenya without the help of a medical professional, she suffered an obstetric fistula: a devastating childbirth injury which is caused by prolonged, obstructed labour. This left her doubly incontinent, with the constant leaking and smell alienating her from her community and husband. Within days he had asked her to leave the family home – “I can’t be with a woman who smells” – and had brought in a new woman to take her place. Leaving her children with her mother, she was forced to flee to Nairobi and, to make ends meet, take work as a prostitute whilst her fistula was still untreated. It was here that she contracted HIV and, without anyone to turn to, felt that her life was over.

Tragically, Joyce’s story is not unique; she is just one of the 3,000 women in Kenya who develop obstetric fistula each year, with the backlog of cases estimated at 30,000. Fistula most commonly occurs among women who live in low-resource countries, who give birth without access to medical help.

Programmes like Action on Fistula are critical to addressing this complex issue. By training fistula surgeons, increasing access to surgeries and running an extensive outreach programme to reach and identify women for treatment, it is transforming lives.

I was privileged to have the opportunity to visit the programme which Forster helped to develop and launch and now promotes through an ongoing communications campaign. We met fistula survivors and medical professionals dedicating their lives to ending fistula with our client Astellas Pharma Europe which provides grant funding to the programme, and delivery partner charity Fistula Foundation.

Joyce is one of the ‘lucky’ ones. After reaching a hospital and asking for help she was signposted to and treated at Gynocare Women’s and Fistula Hospital, a key surgery provider in the Action on Fistula treatment network and the only fistula repair surgery training site in Kenya certified by the International Federation of Gynecology and Obstetrics (FIGO). Her surgery was performed by Dr Hillary Mabeya, one of the leading fistula surgeons in the world. Since the hospital’s launch in 2016 he has treated 700 women with fistula, including a 97 year old who lived with fistula for almost 60 years and whose wish was to be dry for just one day before she died. Dr Mabeya successfully treated her and she passed away peacefully one month later.

The talented surgeon has big ambitions. Looking back to a time when fistula was so prevalent in the United States that a fistula hospital once stood on the grounds of where the Waldorf Astoria Hotel stands today in New York City, he says: “This hospital closed its doors in 1925, our dream is that one day this happens in Kenya.”

Thankfully Joyce is now dry and happy and looking forward to starting her fistula-free life. But there is a long way to go before ending fistula for all women in Kenya becomes a reality. Education sits at the heart of this.

A key problem is that there is a deep lack of awareness of what fistula is and that it can be treated, particularly in rural communities where it is most prevalent. “It’s not easy speaking with girls and women with fistula as there is so much shame”, says Elkanah, an Action on Fistula outreach worker. “Our role is to educate them that their injuries are not their fault and to give them their voices and dignity back.” There is also the assumption that medical professionals know about fistula, but outreach teams often need to educate health teams about the injury.

 

Outreach accounts for more than 85% of referrals to the programme, which makes it as important at the treatment itself. However, finding women and convincing them to come in for treatment is difficult. Seeing a row of empty beds at Gynocare waiting to be filled was a stark reminder of this.

 

“My goal is to reach out to as many women as possible through psychological support, economic empowerment and reproductive health”, explains Habiba Corodhia Mohamed, who is Programme Director of Action on Fistula and Founder of WADADIA, a community based partner organisation that runs health and economic programs to empower the poorest women. Habiba works at the local level to educate communities about fistula and to help identify and refer women for treatment.

Husbands and men are a key focus for this work as they often abandon and stigmatise women with fistula in their mistaken belief that fistula is a ‘curse’ for which women are to blame. We had the opportunity to sit in on a WADADIA support group for men who have been affected by fistula. Men spoke of their journeys from being their wives’ abusers to becoming champions for Action on Fistula, a pretty amazing transformation for a country which is deeply patriarchal.

Education is also key to fistula prevention. In rural communities, traditional health attendants – usually unskilled family members ­– give support with births but are not equipped to deal with obstructed labours and to recognise signs of fistula.  Carol Mabeya, a social worker and Programme Manager of Beyond Fistula – which helps women build their lives after fistula – believes that training attendants is key to addressing this, alongside getting more mobile health clinics to reach women so they can deliver babies safely and ensuring there is access to transport to get women to hospital quickly. “Preventing fistula is so important and must happen in tandem with treatment,” she says.

Whilst there is no quick fix to ending fistula in Kenya, investment in programmes like Action on Fistula is making a huge difference in helping to give women their lives and dignity back and educate communities on the reality of fistula. Through Astellas’ funding, over 2,900 women have already received surgery – with the aim of treating 4,500 women by 2020 – and six fistula surgeons have been trained, doubling the number in Kenya. It is vital that these programmes continue to be funded to ensure women like Joyce aren’t condemned to a life of shame and isolation.

As we are heading out of Gynocare into the African sun I ask Dr Mabeya about his family and about his young daughter who wants to be a surgeon like her father when she grows up. When I ask what she’s called, he says, “Hope.” How fitting.

For more information on the Action on Fistula campaign visit: www.astellas.eu/initiatives/action-on-fistula/