Action on Fistula: Making Inroads in Kenya
We speak to President and CEO of Astellas Pharma EMEA, Ken Jones, about their ground breaking initiative, Action on Fistula.
An obstetric fistula can occur during a prolonged or obstructed labor, leaving a woman with a hole between the vagina and bladder or rectum. This results in urinary incontinence if the bladder is affected or fecal incontinence if the rectum is affected. Sometimes, both occur.
While fistula have been eradicated in the US, they remain a problem in developing countries such as Kenya. The United Nations Population Fund (UNFPA) has estimated that in Kenya around 3,000 new cases of fistula occur each year, ruining the lives of millions of women.
Ken Jones, President and CEO of Astellas Pharma EMEA, says, “Fistula affect between 1 to 2 million women across the African continent. It is hard to know the real number, as there is such a stigma. Because of their physical incontinence – they leak, they smell - they are hidden and ostracized by their families and their community, particularly in sub-Saharan Africa. Therefore, they aren’t given assistance.”
Fistula in Africa alarming
The incidence of fistula is particularly high in countries like Kenya and Somalia. However, assistance isn’t sought for two main reasons – ignorance of the fact that medical help is available and because of the isolation a woman is forced into by the condition.
Jones explains, “In emerging markets and developing countries, there aren’t as many hospitals and no easy access to cesarians. Women are expected to give birth in the villages. Often, once complications set in they can’t get hospital assistance in time.”
After doing some research, we found our employees felt it was more important to have something with a lasting impact. We then went through a selection process, looking at needs and what various companies were doing, then searched for an organization where the impact would be helping people - we wanted our contributions spent on actually changing lives rather than being spent on administrative costs. The Fistula Foundation won our approval.
Action on Fistula, as guided by The Fistula Foundation, was created by Astellas to reach out and treat women living with this condition, in a sustainable way. Jones describes how the initiative came about: “Essentially, we were looking at social responsibility initiatives. We had previously given employees time off to do charitable activities, but once we had conducted surveys a request came up for a more coordinated drive. After doing some research, we found our employees felt it was more important to have something with a lasting impact. We then went through a selection process, looking at needs and what various companies were doing, then searched for an organization where the impact would be helping people - we wanted our contributions spent on actually changing lives rather than being spent on administrative costs. The Fistula Foundation won our approval.”
Astellas commits to €1.5 million in funding
“Astellas’ Action on Fistula program has made available €1.5 million over a period of three years to increase capacity and to create a network of clinics committed to working together to combat the problem of fistula,” says Jones. “We wanted more surgeons trained who would be committed to working with this condition and committed to remaining in Kenya.”
At present, they have two new surgical trainees, and four established surgeons specifically trained in fistula surgery. “You need to consider that although the surgery itself is fairly simple, you can get complications and it is delicate surgery – so there are currently only a small number of surgeons who do this on a regular basis in Kenya,” explains Jones.
He adds, “While it is standard procedure for women in more developed countries to have their babies via cesarian section if the health professional foresees an obstructed labor, in developing countries if women have complications and there is obstruction over two to three days, the prolonged labor often results in a stillborn child and the woman will be left with a fistula.”
As if developing a fistula isn’t enough, Jones explains, “If a woman isn’t treated, she can’t control the problem – she leaks and smells like urine, which can also lead to depression. She can’t go out and is ostracized by her family, as she can’t keep herself clean or maintain hygiene. It’s a very sad thing to happen. Basically, they are run out of town.”
Jones shares the story of a woman who had to wait 51 years for assistance from a surgical team, going on to say, “Patients are of all ages. What was heartening was a thirteen year old we treated. She was just 12 when she was pregnant – her hips were not wide enough as she was immature, so she ended up with a fistula. She was lucky her baby survived.”
In order that women don’t have to wait this long, Action on Fistula is working to improve surgical capacity in Kenya. Jones says, “Several steps are needed. The network of hospitals treating the condition needs to be widened and education is essential to ensure more patients are treated.” The six people already specifically trained are in different regions and counties so they can move around their area of Kenya to carry out operations. Over all, Action on Fistula has one specialist in each area.
A positive response
Jones is justifiably proud of the fact that the Gynocare Fistula Centre, located in Eldoret, Western Kenya, has been accredited by the International Federation of Gynecology and Obstetrics (FIGO). “With accreditation in place,” he explains, “it is possible to certify a trainer and train future trainees - making Action on Fistula sustainable.” In the past, a foreign doctor would fly in to do the surgery and once he flew out that was it – until another foreign doctor flew in.
To date, Action on Fistula has co-operated with a number of local organizations, trained 136 community health workers, and been instrumental in conducting 850 outreach activities. This means that over 60,000 people in 18 counties have been made aware of Astellas’ program.
According to Jones, “There has been lots of support; health workers are being trained and hospitals are engaged in the program. Radio broadcasts and a women’s soccer team are just some ways of getting messages to the villagers to make them aware of the program. This needs to be done delicately and to the right audience. We have to let people know that if labor is prolonged, it is essential to get to a hospital in order not to lose the baby and avoid a fistula.”
Indeed, there is a sense of engagement from employees and the company has established a reward incentive for those who have gone the extra mile – these employees have the chance to go on a trip to Africa with Jones to visit the surgical centers and meet the patients whose lives have been restored due to the social responsibility program of Astellas.
Astellas’ Action on Fistula is maintaining links with the Kenyan Government in order to inform them of what is taking place, and trying to enlist support from the health care system. Jones says, “We need to have surgeons in place, capacity understood, and to manage the flow of patients. It takes some co-ordination – it’s no good having a big drive to raise awareness and then not be in a position to help them when they arrive at hospital.”
He goes on to mention that Astellas' whole organization - in excess of 4,000 employees spread across several different countries - have of their own volition collected money and donated to the program privately, in addition to the company’s €1.5 million input. Indeed, there is a sense of engagement from employees and the company has established a reward incentive for those who have gone the extra mile – these employees have the chance to go on a trip to Africa with Jones to visit the surgical centers and meet the patients whose lives have been restored due to the social responsibility program of Astellas.
And, most importantly, what about feedback from the women receiving this treatment? “Women find this surgery life-saving,” enthuses Jones. “It changes their lives, increases productivity and gives them back their social standing, and social interaction. Often, they can’t thank the surgeon enough. They go home beaming. It puts our lives in the Western world into perspective.”
“One challenge is trying to increase the surgeon capacity and to make sure the people we are training are committed and engaged. We need to screen the motivation of individuals as they are trained at our cost. The person being trained must be committed to fistula surgery and making a difference – so it is a question of choosing the right people as their skills are being upgraded via FIGO,” Jones maintains. He believes they need to break down barriers and choose surgeons and sites where people are really committed.
Another challenge, according to Jones, is, “The lack of access to hospitals who can do C-sections. This is a real problem, particularly in rural areas, as when a woman realizes she has an obstructed labor it may take 5 to 6 hours to reach a hospital.” Currently, there are six treatment centers and Astellas are working on a strong network foundation so that when they start carrying out more activities to raise awareness, they can actually handle the volume of surgeries.
Astellas is also making strides to diminish the social stigma of fistula, and is doing so in quite a unique way. “We have used the current network of patients who have been cured and have asked them to reach out to other women who have the same problem and share firsthand experience,” explains Jones. “We have had a pastor in church speak and inform women and this has led to women coming forward.”
“The challenge is getting an honest discussion going. There is a lot of taboo – many women won’t speak up about the problem. Once a woman has been treated she regains confidence, and who better than someone who has gone through the experience to identify others suffering from the same problem? She will know the signs – women who have had stillbirths, women who are keeping themselves apart from society, and women whose husband has suddenly divorced them,” explains Jones.
Jones has visited Kenya and met with the surgeons performing the life-changing surgery, as well as with patients and staff from the treatment centers. He shares a particularly heartwarming story: “The Action on Fistula program treated one patient whose husband had abandoned and divorced her after childbirth resulted in a fistula. Her family had also abandoned her. After surgery, when she was ready to leave the center, she said she wanted to go back home as she forgave them for how they had treated her.”
An award-worthy initiative
Just over a year after initiating the project, Jones is happy to say that, “So far, 582 women have been provided with reconstructive surgery, enabling them to resume a normal life. By 2017, the plan is to have provided surgical treatment for over 1,200 women and, going forward, to build the capacity to deliver access to surgery for the condition to many more women. After a year we are already ahead of our projected number of surgeries.”
Considering that eyeforpharma are putting this campaign forward for their Most Impactful Global Initiative as part of eyeforpharma's Barcelona Awards 2016, it would seem that Astellas have hit all the right notes with their focus on Africa, women, and empowerment. They are delivering relief and a fulfilled life for those who had lost hope.
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