Coordinating trachoma efforts in Africa

On the occasion of the NNN meetings hosted by CBM in Abu Dhabi this year, we interview Helen Bokea, the CBM regional trachoma coordinator for Africa, based at our CBM Kenya premises. Currently she is overseeing CBM trachoma program activities in the Africa region.  CBM has ongoing trachoma activities in several countries – in Uganda, Malawi, Kenya. Chad, Nigeria, and Ethiopia and in the process of developing programs in other Trachoma endemic countries including Tanzania, South Sudan and the Democratic Republic of Congo (DRC).

Along with other NGOs, CBM is involved in The Queen Elizabeth Diamond Jubilee Trust Trachoma Initiative to tackle blinding trachoma in 11 Commonwealth countries by 2019. CBM is an implementing partner in in Uganda, Malawi, Kenya. In these countries, Helen represents CBM in the Trust’s programmes. Additionally, Helen works with partner organisations to support them in their programme development, implementation and management activities. She also represents CBM in the various coalitions involved in trachoma elimination work. Below are some excerpts from our conversation with her.

What does a normal day in the life of a trachoma coordinator look like?

Well it’s definitely not a boring job! Currently the Trust programmes in particular keep me very busy. We are performing under a tight deadline, so there is a lot of urgency to achieve our targets, so the pressures are different. My task is to make sure that we deliver on our promises. For example in Uganda we are supposed to perform 8,815 surgeries by 2017 having started work in 2014. So a lot of my time is spent on ways to ensure we identify trachoma patients and encourage them to undergo surgery.  As we do this work I also have to ensure that we keep an eye on efficiency, effectiveness, quality and value for money.

And what challenges do you face in your tasks?

There are several challenges, however currently I’d say our highest challenge is identification of trachoma patients in those areas where the backlog is low, because patients do not come forward themselves. Most of them do not know what they are suffering from, or that it can be cured. Many patients are old and aged, they’ve lived with trachoma for many years and some believe they will die with it as well.  Some even reason that there is no point in undergoing surgery so late in life, when they supposedly have such few years left. It’s always a challenge to identify these patients and convince them to visit our clinics for surgery.

Then there are other issues like superstitions and traditions. Often because of misinformation some patients may think that the whole eye is going to be removed or that their condition is as a result of witchcraft. We have to do a lot of community awareness and advocacy to increase understanding on trachoma in rural areas so that people know exactly what the disease is and what the procedure for managing it is.

Logistical issues also need to be overcome - the health clinics are often too far away from the rural communities. To tackle such problems, we use village health teams (VHTs) who are trained as case finders or TT Case finders as they are commonly referred to. They normally live within the communities, which makes it easier for them to find and identify trachoma patients by conducting door to door mobilisation. Our trachoma case finders work from the district level all the way to the household level.

Would you like to share a memorable incident with us?

Once our team operated on a Manyatta leader (community leader) in Karamoja, Uganda. He needed surgery on both eyes, so he underwent surgery and went home with the bandages. That evening word went round in the village that his eyes had been removed, so his community was very incensed, because they believed the rumour. So when the CBM team went to his home the next day to remove the bandages, a crowd quickly gathered and demanded an explanation. The ophthalmic clinical officer (OCO) who was part of the CBM team calmed them down and offered to show them what lies under the bandages. When the bandages were removed, they saw that the leader’s eyes were very much still there and he explained to them about the relief he was feeling! He encouraged other persons affected by trachoma from his community to go for surgery and experience the change. This incident has stuck with me, because this patient became an advocate for our work in his community, and that is definitely a win for us!  Yet it could have gone the other way. This incident is also a pointer to how proactive we have to be in our work and anticipate situations so that we can see how best to make them work for us.

What would you say is your motivation to continue working for CBM?

That’s simple – I get an opportunity to contribute towards changing the patients’ lives and preventing them from losing their sight (without corrective surgery – TT patients go blind). When they describe the pain and suffering they are going through, it’s terrible. They live with this pain for years on end, light hurts their eyes so most of the times they avoid light and sometimes they barricade their houses to keep light away. Many are not able to carry on with their regular duties.  Surgery really transforms their lives. It’s a second chance for them! The work we do has such a concrete impact on so many lives. Most trachoma patients are old, they could easily give up on life, but they don’t! They travel for hours to get to the clinics to be treated. When you see how much joy and relief they feel, it makes me so happy. It’s so courageous of them to go through this. I’m inspired by their lives, they undergo such difficult conditions but they never give up. At times when I watch them walk in for the surgical procedure, I wonder whether I would have the courage to go through it if I was in their shoes.  I think it takes a lot of courage to go through the surgery and it’s really an inspiration to be able to serve them.