How can we achieve elimination in low-endemic communities?

An example from the PHACE programme

How can we achieve elimination in low-endemic communities?

Communities that are low-endemic for leprosy create a curious challenge. Identifying new cases is difficult, as signs and symptoms of leprosy are not often seen and may go unrecognised and therefore left undiagnosed. In rural areas, communities are usually distant from the healthcare services that would make a difference. Low-endemic countries may also struggle to find the funding needed for initiatives aimed directly at eliminating leprosy.

This cocktail of circumstances allows transmission to continue slowly but surely, and people in communities are at risk of leprosy complications if leprosy is not detected early. So, what do we need to do to cut off the flow of transmission in these communities?

The Preventive Health and Community Empowerment (PHACE) programme is one solution to this problem. Its success has rolled from one country to the next. The approach was developed in Bougainville around 20 years ago as the Bougainville Healthy Communities Programme model and has since been replicated in Papua New Guinea, Timor-Leste, and Kiribati. In this article, we will unpick the importance of involving community members in programmes and how this creates a powerful solution to healthcare access issues in rural communities, allowing us to move closer to the interruption of leprosy transmission.

Underserved communities = ongoing leprosy transmission

Transport, electricity, and telecommunications infrastructure are limited in all four programme areas, especially in rural areas. Access to basic services such as healthcare, essential medications, safe drinking water and basic sanitation is a challenge for most of the population. Health and wellbeing essential services are often absent in village communities, creating higher health risks. This context provides a foothold for leprosy to persist amidst other health challenges.

People walk for many hours from their villages to reach basic government services. In some contexts, tribal conflicts and a lack of law enforcement mean it is often unsafe for women, girls, children and people with disabilities to travel by foot, making access to health systems almost impossible for these groups.

Finding solutions within the community

In communities that are at risk of being left behind, the PHACE programme has built a solution from within. The programme trains and facilitates community networks of volunteers who support access to essential healthcare systems and other services.

Community Health Volunteers (CHVs), in collaboration with health facilities and wellbeing services, create a network which spreads through rural areas. Health and wellbeing knowledge is shared with community members through this web and referral pathways are strengthened. CHVs are also trained to spot health issues (including early signs of leprosy) during community visits.

In communities that are ill-served by wider public services, community health volunteers are able to build trust among their peers, providing solutions to their problems and even challenging harmful behaviours. Across the following pages, we will hear about the impact CHVs have on local communities and the personal benefits they gain through volunteering.

The role of CHVs in leprosy

CHVs connect communities with health centres and health posts. They support people with suspected leprosy to access health services, help ensure testing takes place promptly, and follow up with patients during treatment.

Multi Drug Therapy medication can sometimes be in short supply at rural and isolated health posts. In these situations, CHVs work alongside the PHACE team to advocate with health services for timely access to medication and continuity of treatment.

Because leprosy is not common in these places, having community volunteers who can spot the disease is crucial. And because these volunteers offer so much to their communities through other services, they are a regular part of community life, giving them more opportunities to talk about symptoms and spot cases of leprosy.

The community doesn’t have access to TV so they miss the social issues that come up on TV programmes, so our face-to-face communication with them is often the first time they will hear about social issues.

When we talk about social issues, people do listen and we find that they have an understanding of the issues after this.

I like this volunteering role because I get to learn about issues I didn’t know about before. "

Ofelia, a CHV at Misuan Lepra Timor-Leste

Volunteers spoke to 89 communities across the 2 countries

Between 2023 and 2025, over 150 CHVs received training in PNG and Timor-Leste

PHACE initiatives reached over 60,000 beneficiaries.

What information do CHVs share with communities?

CHVs become a hub of knowledge in their communities, teaching the people around them about common and emerging diseases, detecting early signs of leprosy, how to access safe drinking water, the importance of hygiene, and how and when to access health and well-being services.

Sometimes people come to the CHVs and sometimes they go looking for opportunities to share their messages. As well as being a source of knowledge, they also act as a point of referral for community members, carving out pathways to the services they need most but did not know how to access.

CHVs have also received training on human rights, domestic violence and Gender-Based Violence. They provide referral pathways for humanitarian assistance, social assistance, and legal aid. While providing leprosy knowledge is a key aspect of their volunteering roles, being a source of a variety of knowledge supports communities with knowledge about wider social issues that may lead to health decline.

Pathways to services established:

Health clinics and ambulances

Police services

Women's groups

Gender Based Violence and Family Services

Local leaders and businesses

Churches

Schools

The Leprosy Mission

Non-Governmental Organisations (NGO's)

Albert's Story

Albert and Rayleen (Senior Finance Officer, TLM PNG)

Albert Maino, a gifted guitarist, started developing red patches on his skin. This is an early sign of leprosy. He was unaware. His muscles started to weaken, and his hands began to claw. Fear and misunderstanding meant Albert's family and community started to push him away, accusing him of sorcery and cutting him out of family life. This rejection forced him to leave all he knew.

Homeless and alone, Albert battled with trauma and self-stigma, affecting his mental health. He lived with leprosy for nearly six years without knowing what was wrong.

A Community Health Volunteer (CHV), supported and trained by the PHACE programme, recognised Albert’s symptoms and referred him to the nearest hospital. He was diagnosed with leprosy and administered Multi Drug Therapy.

The support didn’t end there. Albert received regular check-ups, and was provided with self-care resources and emotional support. He completed his treatment and is now cured of leprosy.

Today, Albert is rebuilding his life, advocating for people affected and working for TLM in PNG doing data entry for the PHACE programme. Most of all, Albert plays the guitar again, a sign he says symbolises his transformation.

A combined total of 118 referral pathways were strengthened in Papua New Guinea, 23 of which were connections to health clinics.

This result suggests that CHVs and health facility staff have worked hand in hand to improve community health, well-eing and knowledge of the services available.

PHACE teams from different countries gathered together to learn and share in June 2026

This community didn’t know about leprosy before we started teaching them. The cases are not very common here, so when there is a case, people don’t recognise the symptoms.

That’s why we have visited different parts of the community with posters about leprosy, to teach them what they need to know. We have shown that not all skin patches are leprosy and we have taught them the difference between leprosy and non-leprosy patches.

I like that I had this training, I like that I was recommended by one of my community leaders, that he trusted me to do this."

Amalio, a CHV at Misuan Lepra Timor-Leste

More than 1,000 referrals were made to necessary health and wellbeing services between 2023 and 2025.

Volunteers now refer cases of illness, disability, and domestic violence to appropriate institutions, enabling access to services that were previously inaccessible."

PHACE Staff PNG

Training gives us confidence and courage and broadens our minds so we can go and spread that good information in communities and among people, so they do their best to adapt to that new information.

When I read the training materials, my mind was open. I learnt so much. In the family, I sit with them and teach them my knowledge."

Ana Domingas, CHV TLM Timor-Leste

Their journey (Ofelia, Ronaldo and Amalio) demonstrates how community-based training and support can empower local volunteers to become agents of positive change within their communities."

Elfan, TLM Timor-Leste

I like that my family and neighbours have benefited from the training that I have received. It’s been helpful to be connected with the other volunteers."

Ronaldo, a CHV at Misuan Lepra Timor-Leste

The PHACE approach enables trained community members to speak with their local communities, meaning solutions are found in participation with one another. In doing so, it has helped to build healthier communities, which are connected and supported. This reduces the foothold that leprosy has to spread within communities as trusted community members are able to identify and refer suspected cases to healthcare staff.

This is the reason the approach has worked well for two decades and has spread across four programme areas. What can its lessons teach us as we move towards a future with more low-endemic communities?

PHACE's cross-country collaboration means programme teams can learn from one another, creating a collective knowledge of the most effective initiatives for preventative health and community empowerment. In the years to come, this shared learning could prove essential as we push towards the final mile of leprosy elimination.

In places where leprosy is low-endemic, low-priority, and low-visibility, where communities are cut off from public services, media, and healthcare, the PHACE approach has built solutions into the foundations of the community.

If these volunteers focused only on leprosy, their contributions to their community would be rare and people would not often come to them for support. Because they offer such a range of services, they are crucial parts of their community who can promote healthy behaviours and spot signs of leprosy.

In communities that would struggle to access leprosy-specific funding or attract community attention to the disease, this approach allows us to tackle leprosy transmission and build stronger communities at once.

The PHACE programme has been funded by the New Zealand Government's Ministry of Foreign Affairs and Trade and The Leprosy Mission New Zealand.

Funding will support activities until 2027, meaning CHVs will persist in supporting communities through their visits. A further phase of PHACE programme is currently being planned.