ACTION ON FISTULA™ è un progetto pionieristico che, grazie ad un intervento chirurgico, ha trasformato la vita di 4,436* donne affette da fistola ostetrica.
L'innovativo e integrato programma consente a chirurghi, operatori umanitari e ospedali di condividere risorse e informazioni per un trattamento più efficace, e con più alti livelli di assistenza, delle donne che convivono con questo problema.
Entro il 2020, ACTION ON FISTULA™ si prefigge di aiutare più di 4,500 donne ad accedere al trattamento della fistola.
Per ACTION ON FISTULA™ è fondamentale poter continuare ad avere un supporto finanziario, al fine di poter proseguire questo lavoro di grande valore, e che cambia la vita delle persone, anche oltre il 2020. Chiunque fosse interessato può contattare la Fistula Foundation su www.fistulafoundation.org.
What you need to know about obstetric fistula
Obstetric fistula is...
a hole between the vagina and rectum or bladder that is caused by prolonged obstructed labour when emergency care is unavailable, causing either faecal or urinary incontinence or both conditions4.
women suffer from untreated obstetric fistula in Asia and sub-Saharan Africa1.
More than 40%
of women in developing countries give birth without a midwife or doctor present1.
As well as the physical symptoms of obstetric fistula the condition often causes social isolation as women are often disowned by their families and friends due to the stigma of the condition and the smell1.
of vaginal fistulae can be closed surgically5.
With proper treatment, fistula patients have a good chance of returning to a normal life1.
is typically enough to provide one woman with restorative surgery and post-operative care1.
Progress of ACTION ON FISTULA™
ACTION ON FISTULA™ was shortlisted at the 2017 Better Society Awards in the Partnership with an International Charity category2 and won the 2017 Communique Award for Excellence in Corporate Social Responsibility3.
ACTION ON FISTULA™ achievements to date*
Kenyan surgeons trained to internationally recognised standards, certified by the International Federation of Obstetrics and Gynaecologists (FIGO)
Treatment centres enrolled and providing fistula surgeries, as part of the fistula treatment network to extend access to services
Trained and empowered Community Health Workers
Outreach activities conducted across Kenya to identify and bring women in for treatment
Community members who have received messages about fistula and treatment availability
Counties in Kenya where women suffering from fistula have been treated
Flagship hospital: Gynocare Women’s and Fistula Hospital in Eldoret, Kenya built as part of the programme
By 2020, ACTION ON FISTULA™ wants to help more than 4,500 women to access fistula treatment by…**
Extending the treatment network to up to eight treatment centres
Training an additional six surgeons
Training 10 fistula nurses to support women through their treatment journey
Establishing 20 support groups to help recovering fistula patients with psychosocial assistance, economic empowerment, and income-generating activities to enable them to return to their communities
Faith developed a fistula when she was just 12 years old. In the nine years it took her to access surgery, her mother made the decision to leave the household, but her father stayed. Faith has now received life-changing reconstructive surgery through the ACTION ON FISTULA™ programme.
Faith suffered from an obstetric fistula for nine years. Speaking of their long journey together, Faith’s father, Isaac said: “It does not matter how long it takes. This is my daughter. We have come so far. We see the end of the road which will be the beginning. I hope to marry again one day, but only when Faith is totally healed.”
Isaac kept his promise. He is her strongest supporter and advocate, and he has been at her side at every doctor’s appointment along the way. Many women suffering from obstetric fistula are subject to severe social stigma and denied access to education and employment, leaving them in isolation. Faith feels lucky to have such support from her father.
Through ACTION ON FISTULA™, Faith has now finally received surgery at Gynocare Fistula Centre. Her fistula was extremely complicated to repair, and it took several surgeries to heal completely, however Faith is now finally healed and her life has been completely transformed.
She was able to enrol in a reintegration and literacy programme offered to fistula patients at Gynocare. The Centre offers ways for women to learn valuable skills, such as sewing, to help them get back on their feet and earn a living.
Faith has also been able to go back to school. Her teacher said: “In a matter of one month, she went from being barely able to hold a pencil on her first day, to becoming one of the brightest students in her class.”
Access to free reconstructive surgery gave Faith back her health, happiness and a bright and promising future.
During her second pregnancy, Queen was left in labour for two days before being taken to a healthcare facility. The prolonged labour resulted in a stillborn baby, with Queen suffering an obstetric fistula and being left unable to walk. Incredibly, Queen endured double incontinence for 40 years, before finally being treated by the ACTION ON FISTULA™ programme.
In 1971, aged 17, Queen was forced into an arranged marriage. Sadly Queen’s first child was stillborn. With her second pregnancy Queen was in labour for two days before travelling to the nearest healthcare facility for help.
After a prolonged labour Queen lost her baby and suffered an obstetric fistula, leaving her doubly incontinent. She was also left unable to walk as a result of injuries sustained from her baby being forcibly removed. When she returned home, she was shunned by her husband and felt feelings of deep isolation and emptiness.
Queen explains: “When my husband saw my injuries, he began to verbally abuse me, calling me a cripple. I was always alone, and often starving.”
After a long period of abuse, Queen returned to her parents but after a few years they died and Queen again felt deeply alone. Fortunately, she was identified and subsequently referred to Gynocare Fistula Centre, where she received free surgery to repair her obstetric fistula, funded through the ACTION ON FISTULA™ programme. After years of isolation, Queen says she now feels valued, and looks forward to being treated with respect and dignity.
“I do not own anything, I don’t have a husband or child – my life is empty. But at Gynocare I am happy, I have found a family and will finally be clean again.”
Evelynne was encouraged to stay at home to deliver her second baby. She laboured for three days with the help of a traditional birth attendant, but despite giving birth to a lively baby boy, in the lengthy birthing process she developed a fistula. Evelynne has now received life changing reconstructive surgery through the ACTION ON FISTULA™ programme.
Evelynne lives far from any health facility, but when a mobile clinic came to her village she sought assistance for her fistula which had left her incontinent. Due to a lack of widespread understanding of obstetric fistula, she was told by the nurse that she couldn’t be helped, but was given a few tablets of medicine just in case. However, the urine continued leaking.
Her husband decided that he couldn’t tolerate the smell of Evelynne in the house, so he left her and moved to Uganda with their cattle. Her in-laws asked her to leave the house and so she was forced to return home to live with her mother.
Evelynne’s mother, however, had previously met Jen, a Community Health Volunteer with the outreach organization WADADIA. Jen went from house to house telling people about a condition called fistula. At the time, Evelynne’s mother did not realize that her daughter had this condition, but as soon as she returned home she thought of Jen and was able to make the connection.
Evelynne says she was treated very well at Cherangany Nursing Home where she received her fistula repair surgery through the ACTION ON FISTULA™ programme, and she was so relieved to be dry when she left the facility. When she returned home she was able to find Jen to inform her of the good news and thank her for the help she provided.
She is now living with her husband and two children again and is feeling healthy and happy.
Everlyn developed a fistula during her second pregnancy. Shunned and stigmatised by her own family, her husband stood by her until she received successful treatment through the ACTION ON FISTULA™ programme.
Everlyn, aged 30, from Vihiga County in Kenya, developed a fistula in July 2003 during the birth of her second child. She was in labour for a day and a half. The distance from her home to the nearest facility was only one kilometre away but, as she had already laboured at home for nine hours, her condition had deteriorated.
On reaching the health facility, she discovered that they were unable to help her because it was not equipped to manage her situation. She was referred to a hospital in the larger town of Kisumu, where she tragically delivered, through caesarean section, a stillborn baby.
Her story is somewhat different from the story of many other women because, in her case, instead of her family remaining close to her, they were the ones who stigmatised her. She only found solace in her husband, who even went as far as quitting employment to take care of her. Her family told her that she brought shame upon them, and that they wished her dead.
Her fistula was very complex and two attempts at repair were not successful. She finally underwent successful diversion surgery, provided free of charge through the ACTION ON FISTULA™ programme. She is delighted that she can now regularly go out like other women; the last time she went to church was 11 years ago.
She now looks forward to contributing to her home and community by getting into business and raising her son.
Felistus developed a fistula at the age of 17, after delivering a stillborn baby via Caesarean section. Her husband left her because he could not cope with her condition. She suffered alone until receiving surgical treatment through the ACTION ON FISTULA™ programme.
Felistus is 17 years old and from the town of Bumala, Kenya. She was married at the age of 16 after becoming pregnant. Felistus went into labour at midnight and, due to the lack of available transport at this time of night, had to endure the pain until dawn. She was then rushed to the nearest healthcare facility and continued to labour for 12 more hours. At this juncture they realised that she needed to be referred to another facility that could deliver her baby through an emergency Caesarean section. Sadly, she delivered a stillborn baby boy.
Two days after her operation Felistus started leaking urine. At the beginning she thought that perhaps this was part of the delivery process. However, after some time had passed, she realised that something was wrong. She talked to her nurses about it, but they incorrectly assured her that with time, the fistula would heal. While still at that facility, she developed other complications and was then referred to a provincial hospital for surgery on these other issues.
Felistus lived with fistula for two and a half months; the most painful part of her life. In the beginning, her husband was very understanding and supportive. However, after receiving bad advice from friends, his attitude towards her changed drastically. He told her that he could not stand sleeping on a wet bed every night. Felistus couldn’t go back to her parents’ home because she had left both her family and school for her husband. Then, one day her husband left the home and never came back.
Fortunately, following a visit to a health facility for a catheter change, Felistus learned about fistula treatment provided by Gynocare Fistula Centre, funded by the ACTION ON FISTULA™ programme. She couldn’t believe that she was able to access free surgery and that she wouldn’t have to wait for treatment.
Following successful fistula surgery, Felistus’ husband got back in touch and she is now looking forward to reuniting with him and living her new life.
Pastor Raphael's story
Pastor Raphael was trained by WADADIA to counsel women with fistula and is passionate about helping women in need.
Pastor Raphael has been a pastor for nearly three decades. He has dedicated his life to providing spiritual guidance in his community as well as to passing along knowledge. The West Pokot region, he says, has little education and faces many challenges due to lack of awareness on how to prevent and treat illnesses.
Girls and women in particular face many challenges. Pastor Raphael explains that female genital cutting is nearly universal in this community, with girls as young as nine or ten undergoing the ritual. Girls are often married off at a very tender age and start child-bearing when they are still very young. Most women choose to deliver at home because they are more comfortable in that setting and that is what everyone in their family has always done. In addition, the nearest hospital is nearly four hours away.
Pastor Raphael is pleased with the training he received from WADADIA in July 2014, and was able to come back to his community and share what he learnt. He works closely with chiefs and other religious leaders to spread the message about fistula, and they are glad to assist in helping women get treatment. “The women really suffer when they have this condition,” explains Pastor Raphael. “Many of their husbands chase them away when they realise their wives are incontinent and malodorous. They can become very isolated. Women with fistula also find it hard to make a living; many women collect and sell the water from the aloe vera plant to earn a small income, but when they have fistula they are unable to do this work and therefore can’t earn money.”
Pastor Raphael acknowledges that it can be challenging to convince women to come to the hospital for surgery, as they have many doubts and anxieties about leaving. Practical concerns such as, “How will my children be cared for? Who will care for my animals? How will I manage to get transport? And will I be OK when I return?” These are all familiar questions to Pastor Raphael, who spends much of his time counselling women and reassuring them before they feel comfortable enough to go to the hospital for treatment.
Pastor Raphael praises the work of WADADIA and the donors, such as ACTION ON FISTULA™, that have contributed to its work. He says, “Keep up the good work because the people of Pokot need help. God bless you.”
Programme news and views
Star fundraisers from across Astellas EMEA were given a once in a life time opportunity.
ACTION ON FISTULA™ is supported by a grant to the Fistula Foundation by Astellas Pharma Europe Limited (“Astellas”)
Seeing is believing: Antonella Di Lorenzo, Elzbieta Wrzesinska, Margot Kubosch Garcia
In October, star fundraisers from across Astellas EMEA were given a once in a life time opportunity to visit Kenya and see the first-hand impact of Astellas’ ACTION ON FISTULA™ programme. Christina, Margot, Elzbieta and Antonella were chosen in recognition of their hard work and creativity in helping raise additional funds for the programme. The ‘Seeing is Believing’ trip was an action packed three-day visit designed to show the progress ACTION ON FISTULA™ is making in its aim to treat 4,500 women with fistula by 2020.
Here they share their stories of seeing the life-changing programme in action.
Margot Garcia Kubosch, Astellas Spain: “It was only when I had the opportunity to visit the ACTION ON FISTULA™ programme in Kenya that I really understood how much women suffering with fistula have been through. It was really hard to see how young some of the patients were and the personal stories that the women shared with me will always stay with me.
I learnt that this programme is much more than giving reconstructive surgeries to patients. It also helps the women integrate back into society, as many have been shunned by their husbands and communities due to their condition, and it teaches them life skills which can be used to help them find work.
As well as meeting surgeons and patients, I also met community outreach workers who help raise awareness of ACTION ON FISTULA™ in poor, rural areas where women don’t understand what fistula is and that there is treatment available.
It was also incredible to meet the fistula surgeons who are so emotionally invested in their patients and what they do. I am so proud of the work which we at Astellas have managed to achieve in bringing a better future for these women.”
Elzbieta Wrzesinska, Astellas Poland: “The trip really opened my eyes to some of the difficulties that people face in different parts of the world. It was great to see the results of our programme first hand and also to meet Dr Mabeya, lead surgeon at Gynocare Women’s and Fistula Hospital, who is dedicating his time to treat women with fistula. I hope with our help he can achieve his dream – that one day the hospital will close as fistula in Kenya is eradicated.”
Antonella Di Lorenzo, Astellas Italy: “It was a trip full of emotions and I found it an amazing experience to see the work that has been achieved to date. I was surprised by the high level of involvement Astellas has with the programme and seeing this has made me feel even more proud to be working with them.”
ACTION ON FISTULA™ to transform 4,500 lives by 2020
ACTION ON FISTULA™ is supported by a grant to the Fistula Foundation by Astellas Pharma Europe Limited (“Astellas”).
- ACTION ON FISTULA™ has already treated over 2,500 women with obstetric fistula
- Astellas Pharma supports Fistula Foundation in its second phase of the programme to work towards ending obstetric fistula
Chertsey, England [23 May, 2017] On International Day to End Obstetric Fistula, Astellas Pharma Europe Ltd (“Astellas”) pledged its support to the Fistula Foundation as the second phase of ACTION ON FISTULA™ launches with an ambitious target to treat 4,500 women with obstetric fistula in Kenya by 2020.
ACTION ON FISTULA™, supported by a grant from Astellas, is a programme set up by the Fistula Foundation in 2014 with the initial objective to transform the lives of more than 1,200 women in Kenya living with fistula: an injury caused by prolonged obstructed labour, leading to faecal or urinary incontinence or both. It most commonly occurs among women who live in rural communities in low-resource countries, who are not aware that help is available or are unable to reach a hospital.
The programme has already:
- given over 2,500 Kenyan women with obstetric fistula life changing reconstructive surgery
- significantly increased surgical capacity in Kenya to treat the condition by training six fistula surgeons
- set up a fistula treatment network to extend access to services, with six treatment centres enrolled and providing fistula surgeries on a routine basis
- built a major outreach programme to identify and bring women in for treatment.
From May 2017 – April 2020 ACTION ON FISTULA™ will:
- provide surgeries to an additional 2,000 women with fistula and continue to build capacity in Kenya to deliver ongoing treatment
- extend its treatment network to up to eight treatment centres
- train a further six surgeons at the Gynocare Women’s and Fistula Hospital in Kenya, including clinicians from outside the country to build capacity across sub-Saharan Africa and South-East Asia
- train 10 fistula nurses to support women through their treatment journey
- establish 20 support groups throughout Kenya to provide recovering fistula patients with psychosocial assistance, economic empowerment and income-generating activities to help enable survivors to return to their communities.
Kate Grant, CEO, Fistula Foundation, comments, “Our partnership with Astellas has enabled us to transform the treatment landscape in Kenya, from hospitals that worked largely in a vacuum, to a country-wide network of six facilities offering regular fistula treatment. The results have been incredible, enabling us to treat more than double the number of women we initially set out to help.”
Yukio Matsui, Chief Commercial Officer, Astellas Pharma Inc., said, “We are enormously proud of what the programme has achieved in such a small space of time. Through the commitment and skill of Fistula Foundation working to train surgeons and mobilise outreach teams on the ground in Kenya, ACTION ON FISTULA™ has transformed the lives of more than double the number of women it set out to. This is truly remarkable."
“Over the next three years we have set ourselves an ambitious goal of treating many more women with this devastating condition and building an even stronger treatment infrastructure in Kenya so the legacy of ACTION ON FISTULA™ lasts for many years to come.”
Whilst virtually eradicated in developed countries, the United Nations Population Fund (UNFPA) estimates 3,000 new cases of obstetric fistula occur annually in Kenya, with approximately one to two fistulas for every 1,000 deliveries6.
Women with fistula are often subject to severe social stigma due to odour, which is constant and humiliating, and in many cases drives the patients’ family, friends and neighbours away. Stigmatised, these women are also often denied access to education and employment and left to live lives of isolation and poverty.
ACTION ON FISTULA™ was recognised at the 2017 Better Society Awards for its work with Fistula Foundation in the ‘Partnership with an International Charity’ category and the 2017 Communiqué Awards for the ‘Excellence in Corporate Social Responsibility’ category.
Astellas is committed to the long-term sustainability of society by improving Access to Health and medical solutions, fostering scientific advancement and enhancing the health of our communities. ACTION ON FISTULA™ is a flagship programme of Access Accelerated, a multi-stakeholder collaboration focused on improving non-communicable disease care supported by Astellas Pharma Inc.
About Fistula Foundation
Founded in 2000, Fistula Foundation is dedicated to ending the suffering caused by the childbirth injury of obstetric fistula and has worked across 32 countries at sites on two continents; Africa and Asia.
Based in the USA, Fistula Foundation raises money in order to enable local partners in each country to increase their surgical, nursing and outreach capacity, and help women access treatment.
Fistula Foundation is currently seeking additional funding partners for the ACTION ON FISTULA™ programme and other Fistula Treatment Networks operating in Africa. Anyone interested should contact them via www.fistulafoundation.org.
NPR/18/0047/APELa. January 2019
This website is owned and controlled by Astellas Pharma Europe Ltd. ACTION ON FISTULA™ was conceived, built and is run by Fistula Foundation. ACTION ON FISTULA™ was started in 2014 by a grant given to Fistula Foundation from an affiliate of Astellas Pharma Inc., Astellas Pharma Europe Ltd. Fistula Foundation and Astellas jointly funded Phase I of the program, 2014-2017. Astellas is funding approximately 25% of the second phase of the program running from 2017-2020. It is a flagship programme of Access Accelerated, a multi-stakeholder collaboration focused on improving non-communicable disease care supported by Astellas Pharma Inc.