Putting people at the centre of our work to eliminate neglected tropical diseases

Sightsavers has been supporting governments in the Democratic Republic of Congo (DRC), Guinea Bissau, Nigeria and Uganda to eliminate river blindness and lymphatic filariasis.

The work, carried out with funding from UK Aid Match, is helping to improve millions of lives.

Both river blindness (also known as onchocerciasis) and lymphatic filariasis (LF) are debilitating neglected tropical diseases (NTDs) that are caused by parasites, and can be treated together. For the past three years we have been doing just that – delivering 60 million treatments to stop infection from spreading and reaching 9.5 million people for river blindness and more than 12 million people for LF.

The programme has also helped to find and treat people already suffering from symptoms caused by LF, then supporting them throughout their care.

Here’s what we’ve learned from the programme.

1. Patient care starts with the person

Lymphedema, which is caused by LF, makes the limbs and other parts of the body swell. This causes discomfort and often restricts people’s movement.

We have been helping people with lymphedema to understand how to care for their limbs and reduce the debilitating, acutely painful attacks they experience, which can often last for days. In men, we have been providing surgery and aftercare for hydrocele, which causes the scrotum to swell, leading to pain and disability.

This kind of patient care starts with the person, not the disease. It’s about supporting an individual at every step of their diagnosis, treatment and recovery. Support can come in many forms, including guidance on how to cope with and reduce symptoms, money to cover transport costs for clinic visits, or reminders about follow-up appointments. This is not just effective for the individual concerned: focusing on someone’s journey from start to finish, and strengthening every step in that process, also strengthens health systems. This is because every link in the health system chain – from outreach to clinic to aftercare – has to function in order for treatment to work.

2. Community-led case finding

Before the process of patient care can begin, you have to find people in need of treatment, which is not always as easy as it sounds. Symptoms related to LF can be very dramatic and disfiguring and, as a result, are hugely stigmatised. The more pronounced the symptoms, the greater the stigmatisation – and the more someone may be reluctant to seek help.

Because hydrocele affects the scrotum, it is particularly stigmatised and mythologised. It can be seen as a both curse and a sign of virility. People’s beliefs that the disease might be spiritual rather than medical leads some to think it should be dealt with in a spiritual way, which stops them from seeking treatment. On top of this are all the usual barriers associated with accessing health services, such as a fear or uncertainty about what might happen when you arrive at the clinic, or what the costs might be.

The only way to overcome such barriers is to enlist the help of people from affected communities who are well known and trusted. A number of volunteers involved in the programme’s mass drug administrations (MDAs), all of whom came from communities they were serving, were trained to identify people with lymphatic filariasis-related symptoms. Once the volunteers had found people, health professionals would officially diagnose them and they would then be registered as a patient and followed-up with care.

3. The power of listening

Seeking feedback from affected communities was important throughout the programme. In Uganda, we carried out a survey to better understand people’s attitudes and understanding of LF, which clearly showed what the issues were. We heard that, in the past, trying to get treatment had been frustrating; people were undergoing long and painful journeys only to be misdiagnosed or told there was nothing that could be done. Others said services were too expensive.

So we designed interventions to address these issues. This was extremely effective; around 700 people came forward, some with very advanced symptoms, suggesting they had been living with the disease for some time.

Our constant feedback loops, operating in real-time throughout the programme, also alerted us to the fact that there was a need to address schistosomiasis and intestinal worms in DRC, Guinea Bissau and Nigeria. With funding secured from GiveWell, we were then able to offer a fully integrated programme for the four diseases where there was need.

4. Trust is key to reducing stigma

Many men who underwent hydrocele surgery became prominent agents of change, not only successfully convincing other men who were suffering to have surgery themselves, but encouraging the community to take part in MDAs to stop future generations from having to live with the disease. Because people they knew and trusted were telling them, showing them, there is no shame to the disease and something can be done about it, more and more people came forward. This reinforced everything we were trying to communicate and helped us achieve what we needed to.

For instance, in the first year in Nigeria we identified around 400 people with hydrocele and they were all treated effectively. As a result, more and more people presented, resulting in more than 1,400 hydrocele surgeries taking place in Nigeria in just two years. Our commitment to patient care created this change, instilling trust in communities about both the causes of lymphatic filariasis and how it can be treated effectively.

5. The link between inclusivity and data

An important aspect of the programme, and for NTD elimination in general, is ensuring that people from marginalised groups are reached.

We did this by being ‘inclusive by design’ – meaning that we looked at equity, gender and social inclusion as a thing in and of itself; the first Sightsavers’ NTD programme to take such an approach.

For instance, say 80% of the community needs to receive antibiotics for it to affect transmission of a disease. This means that although 20% of people don’t need to be treated in order to for the MDA to benefit everyone, you need to ensure that people in this 20% don’t all come from marginalised groups, such as people with disabilities or women.

To address this we started to disaggregate our patient data by age and gender, to assess whether certain groups were missing out.

We also included questions in some of our MDA surveys to assess whether systematic exclusion of certain groups was occurring. This data suggested that access to MDAs was generally equitable between groups. Relatively small sample sizes meant we accepted this conclusion with some caution. We are now working on ways to strengthen the methodology for assessing equity, something that will be used in future programmes. Indeed, this process has already changed the way Sightsavers works; equity questions are now part of many treatment coverage surveys, and it is taken for granted that these treatment surveys will be part of the formal monitoring system of how we administer drugs – that was not the case three years ago.

This, and many other learnings, are important legacies of the programme, which I hope will serve to inform all those working on NTDs as we continue on the path towards elimination.

Ron Bannerman
Ron is Sightsavers’ Project Director for the UK Aid Match onchocerciasis and  lymphatic filariasis programme, and is based in the United Kingdom.