Stephanie Akweyu is CBM’s regional Neglected Tropical Diseases (NTD) coordinator for Africa, based at the CBM office in Nairobi, Kenya. Currently she is overseeing CBM’s trachoma and onchocerciasis programme activities in Africa. She works with partner organisations to support them in their programme development and implementation of activities. She also represents CBM in the various coalitions involved in trachoma elimination work.
CBM’s NTD work
CBM is supporting ongoing trachoma activities in Kenya, Chad, Nigeria, DRC, Burundi and Ethiopia. Along with other NGOs, CBM is involved in The Queen Elizabeth Diamond Jubilee Trust Trachoma Initiative and DFID-supported trachoma programmes to tackle blinding trachoma in 11 Commonwealth countries by 2019. CBM is currently an implementing partner in Kenya and Chad.
CBM also supports onchocerciasis activities in DRC, South Sudan, Nigeria, Burundi and the Central African Republic (CAR). CBM is the recipient of Mectizan drug donations from the Mectizan Donation Programme (MDP) for these five countries.
What does a normal day in the life of a trachoma coordinator look like?
I joined the NTD team to coordinate trachoma programmes in four countries; in addition, I now also work on some onchocerciasis programmes supported by CBM in Africa. Both these diseases cause irreversible blindness.
My days are generally filled with the pressures that come with supporting different countries to eliminate Neglected Tropical Diseases. Each country’s reality is different, but all of them have the same goal. Take trachoma for instance, the global goal is to eliminate it by 2020, which is fast approaching. My task is to make sure these countries eliminate trachoma as close to this date as possible.
In Chad, where we started in 2015, we are to deliver 5,449 surgeries before mid-2019. In Kenya having begun in 2014, we are supposed to do 2,451 surgeries by the end of 2018. You can see that the deadlines are quite tight.
I spend a lot of my days making sure we are able to identify and manage trachoma patients through surgery and also working with ministries of health to distribute drugs to communities so that the transmission of onchocerciasis can be interrupted.
Download the CBM NTD Report 2018
More than 1 billion people – one-sixth of the world’s population – are affected by one or more NTDs, and another 2 billion people are at risk, mainly in the tropics and sub-tropics. Take a look at our Neglected Tropical Diseases Report 2018 for more information about our work with NTDs.Read more
And what challenges or frustrations do you face in your tasks?
In countries where we support onchocerciasis programmes, the greatest challenge I would say is keeping up the momentum in the donor community. In some countries, CBM has been consistently supporting the annual distribution of Mectizan for more than 10 years, and still going. As you can imagine, it can be quite difficult to fundraise or keep the engagement for such a long-term commitment.
It gets even more challenging because most of these countries are also dealing with high levels of insecurity or instability. Nevertheless, when you see the determination of the Ministries of Health to continue working for their communities, it is clear that we must continue to walk this journey with them.
For trachoma, the biggest challenge is to find patients for surgery especially when the programme is approaching its end. One must realize most of the patients are much older and fearful of surgery - which is very understandable. Inasmuch as we are trying to meet programme deadlines and targets, our teams and case finders require a lot of patience as they raise awareness in these communities, helping them to understand the sight-saving benefits of the surgery.
All the while, we must also ensure that these services are accessible to all, yet still being delivered in an efficient way.
Would you like to share a memorable incident with us?
Our team from Uganda conducted outreaches in Karamoja and Busoga regions from 2014 to 2018. There were many patients requiring surgery, especially in Karamoja; but there were also very many who were apprehensive about the surgeries. This was alarming because without surgery, TT patients inevitably go blind.
Soon, the team realized that their message actually increased the patients’ fear. These people thought that surgery meant that the eyelids would be cut off or that the eyelashes would be completely cut. You see, in the past some of their healers had resorted to the latter as a remedy.
So the team immediately changed their communication strategy and the village case finders helped to demystifying what happens in surgery.
What turned the tide in our favor was former patients who became our greatest champions in the community. It was also good for us that some of them were community leaders who could give their own experiences of the surgery and the relief they felt afterwards. It became quite common in Karamoja to see some of our former patients bringing in new TT patients to surgical camps.
This remains memorable for me because now I realize that services can sometimes be inaccessible because of miscomprehension. We need to go the extra mile to listen to people and understand where they are coming from – only then can we make services truly accessible.
What would you say is your motivation to continue working for CBM?
Getting to hear all these patients’ stories makes me realize I am contributing to something bigger, something that actually affects someone’s life positively. People could go blind if nothing is done, or they could have their sight saved if reached in time.
The work CBM is doing has an impact that crosses over generations.
For onchocerciasis, some of these communities have been affected for decades and decades. Now with the drugs being distributed annually, it means that the next generation will not have to worry about the debilitating itching or eventually going blind from onchocerciasis.
For trachoma, when most of these patients have given up and accepted going blind is a fact of life they can’t change, the surgeries give them new hope they had not dared to have.
So when I see, hear and think about all of this, I can’t help but be inspired.