Active Case Finding: How to get it right

Active case finding is arguably the most effective tool we currently have to end the transmission of leprosy. As opposed to passive case finding (waiting for patients to arrive at a health centre), active case finding means going out and searching for new cases of the disease. And whether the future of leprosy transmission is dominated by PEP, a rapid diagnostic test, or a vaccine, active case finding will play a crucial role in the final victory against leprosy because without it, each of these tools will be far less effective. It is very likely that we will not defeat leprosy without active case finding.

Compared to the complex science behind PEP, diagnostics, and a vaccine, active case finding sounds quite straight forward; you send healthcare teams to a community and find individuals with symptoms of leprosy. But despite its apparent simplicity and its pivotal place in our work, active case finding is proving a challenge to get right, with logistical, political, and contextual hurdles that can appear insurmountable.

In this article, we speak to TLM's Lead for Monitoring, Evaluation, and Learning, Pierina Dsouza, who speaks regularly to teams about the active case finding challenges they are facing and how they are overcoming them.

Photo credit: Ricardo Franco

What does active case finding look like in practice?

Skin camps

Setting up a camp in a community for a day and inviting community members to come to the camp with any skin issues they are concerned about. These are often advertised in advance.

Contact screening

When a person is diagnosed with leprosy, we can examine their close contacts for symptoms of the disease. WHO guidance is that this can only be done with the patient's permission.

Blanket screening

If there is a community with a high number of leprosy cases, a number of healthcare personnel can visit the community and go door to door searching for cases of the disease.

School camps

In some communities, we may visit a school and examine pupils for symptoms of leprosy. This would be done with discretion, so as not to draw unwanted attention to any children who are diagnosed.

Government vs NGO: whose responsibility is this?

According to WHO guidance, active case finding is the responsibility of government health systems, but Pierina has seen that reality is more complex than that.

"Where the rubber hits the road, we hear a different story. For example in Bangladesh District hospitals experiencing acute staff shortages, the doctors we work with us ask, ‘if we send staff to the field to look for new leprosy cases, who will stay at the health facility to treat patients?’ It's a legitimate concern and a sign of what we're seeing at the moment, which is a lack of financial and political commitment from governments who have many pressing needs.

“The reality is that NGOs should not take on the primary responsibility for active case finding. We are not equipped with the funding, staff or systems to do it effectively over the many years it will be necessary for. But we must also acknowledge that the costs for governments are big, too, for training, travel, follow-up, staff time. We cannot ignore what it costs them, so we need to encourage and supplement their efforts.”

Photo credit: Ruth Towell

How we can encourage government engagement

Any time we work with governments, we are engaging in advocacy, and as Pierina highlights, each government is going to be facing different challenges that require different responses.

"We have been quite innovative in how we have adapted to government needs and programmes. One of my favourite examples of this is in Mozambique, where leprosy cases are often found in very remote areas that are hard to access. By talking to local government health teams, TLM Mozambique learnt that there was a willingness, but not a means to achieve active case finding; the health workers wanted to go to the communities, but they had no way of getting there. Our teams supplied the bikes and fuel to get the health workers to leprosy endemic communities and in doing so, created government ownership of active case finding. Simple but effective. Elsewhere, the challenges will be different.

“Whatever the context, a lack of funding will always be a problem, but not a lack of vision or willingness. This is why we need to integrate our efforts into innovative and diverse health interventions. In India, for example, ASHA workers are regularly visiting communities to engage in maternal and infant health. Training ASHA workers to identify symptoms of leprosy has worked as one way of conducting active case finding. In other countries, perhaps we'll be integrating into TB programmes or programmes looking at other skin conditions or NTDs.

“In some countries we have seen successful active case finding when our teams have arrived with project funding for two or three years and they use that funding to work alongside the government health services. It is a great way to jump start active case finding in a country, but the challenge is getting the momentum to continue after the project funding ends. For that, we need communities to be engaged.

TLM's active case finding success

"In 2025, TLM supported the screening of 1.64 million individuals, up from fewer than 500,000 individuals in 2021. This led to the diagnosis of approximately 10,000 new cases in 2025. This amazing result is due to TLM's commitment to active case finding. There are many examples of effective collaboration and co- creation of strategic interventions with governments, other NGOs and community partners including OPLs and OPDs.”

Community engagement is the key to successful ACF

"No matter how remote a community is, there are still leaders within that community, still faith groups, still services that reach them, and still people willing to volunteer their time to serve their community. Often there are other NGOs or charitable organisations present, as well as traditional healers. Then there is perhaps our most valuable active case finding partners, Organisations of Persons Affected by Leprosy (OPLs). All of these people are a resource that can help us to make active case finding sustainable.

Organisations of persons affected by leprosy

“What if we had some funding available to OPLs to support them to continue screening for possible cases and referring for formal diagnosis? This could include, for example, active screening of family members of index cases in the years following diagnosis. We have seen in countries like Myanmar that community members can even feel more open to speaking to a person affected by leprosy than they do a doctor because it is less intimidating and because the person affected by leprosy knows what they are going through. They would become resource people on the ground who could spot problems and keep communities engaged.

“In India, Bangladesh, and Ethiopia, we have had the UPLIFT study, which is looking at getting persons affected by leprosy to support health systems strengthening. We need to look at training and engaging OPLs so that they can support and strengthen health systems with active case finding and leprosy control. They are people often in remote areas, often with long-term health needs, which makes them ideal candidates to help health systems to see and plug the gaps in their service.”

Other paths to community engagement

Family resource persons

There are two particular challenges with active case finding that families and community members can help us to solve. The first is a question of timing. Health workers visit communities during the daytime, but many people (particularly men) work during those times and aren't found at home. The same is true for schoolchildren, who aren't at home during the day. If active case finding was conducted by people embedded in the community, that would enable more visits outside of working hours and access to people we are not otherwise reaching.

Another challenge with active case finding is also a question of timing. A person could present with no symptoms of leprosy one day, but a few months later their symptoms appear. What if the skin camp happens just before symptoms appear? This is why we must leave awareness materials with families who have experienced cases of leprosy, so they know what to look out for.

In Bangladesh, we have an excellent programme of family resource persons. Members of the family will be trained to look out for signs of leprosy within their family members and are given the information they need to make a referral for formal diagnosis. These same people may also watch out for their neighbours and other community members. This is similar to the PHACE project, operating across a number of TLM countries.

What role can leprosy NGOs play in the future of active case finding?

"There is no endless money tree available for active case finding , so we need to be smart with how we use our money. Training members of the community and including them in the active case finding programmes that we fund is a must.

"We can also make our expertise available to government health services. Training and retraining will be essential for them, but even then a doctor can be reluctant to diagnose leprosy because they have no diagnostic test. Our team in Bangladesh have an innovative solution for that. In those cases, government doctors can contact our leprosy specialists via the phone or messaging to get a second opinion. That can prove to be the difference between someone receiving their MDT or not.

"We also need to find flexibility outside of our project funding. If we fund active case finding in a community for two or three years, we should set aside a small amount of budget for our teams to revisit the community in the following years to follow up and provide fresh impetus to the community members who are responsible for active case finding.

"Lastly, there is so much fear around leprosy still. People are afraid to be diagnosed with disease and afraid that others will find out. We can have all the funding in the world, but if we do not help people beyond their fears, we will be wasting our money. Being screened for breast cancer used to be a taboo thing, but that's not the case anymore because so many organisations broke down the stigma. Community and faith leaders can help us to do that for leprosy, too.

“Around every corner, active case finding will present us with a new challenge, but around the next corner we will find a new solution. Whatever the challenges and solutions, active case finding is non-negotiable if we want to end leprosy transmission. If we invest in communities and are smart with our money, we will get there.”

Cover photo credit: Tom Bradley