Lepra launches new strategy to help find the missing millions affected by leprosy

As UK-based charity Lepra marks its 100-year anniversary, it hopes to focus the world’s attention on one of the oldest and most misunderstood diseases – leprosy.

Leprosy is not a disease of the past. It still exists, but with early detection and treatment, it is entirely curable. More than 500 people across the globe are diagnosed with leprosy and start treatment each day; 28 of which are children.

As a bacterial infection, leprosy can cause damage to nerves, which over time can result in loss of sensation in affected limbs, and can impair functioning of the hands, feet and eyes, which cannot be reversed. If left untreated, it can lead to serious injuries and the development of permanent disabilities. The impact on the individual can be profound, extending beyond the consequences of physical health, to the socioeconomic and emotional impact which can be equally devastating.

There is no vaccine for leprosy but there is a cure and the earlier a person affected receives treatment, the less likely they are to experience disabling symptoms. It is thought that as many as 3 million people remain undiagnosed, with around 60% of global cases occurring within India where, alongside Bangladesh, Lepra focuses its work.

So why does leprosy still exist?

Leprosy is a highly complex disease, taking up to 20 years to incubate before symptoms develop. As such it is a difficult disease to study outside of the human body, which coupled with historic underfunding and under-resourcing of research and specialist services, means that the disease is often missed or misdiagnosed.

There are also many social and economic barriers which prevent people from seeking early treatment. Alongside issues in health equality and access, there remains significant prejudice and discrimination towards people affected, borne out of misunderstandings and misinformation. Many people still mistakenly believe the disease is highly contagious (it needs prolonged exposure to spread) and do not realise free treatment is available. In many ways, the fear and mistreatment has become a disease in its own right, which requires a generational shift in our understanding of leprosy.

Finding the missing millions

As Lepra’s centenary year closes, the organisation is launching a new strategic approach, which seeks to greatly increase early detection and treatment with its innovative person-centred and community-empowered approach.

Lepra’s ASPIRE project works in partnership with the local community and existing health services in the Jamui District of Bihar to provide robust ‘Active Case-Finding’ (ACF), which is helping to drastically improve detection rates. ACF simply means instead of waiting for people to self-report, Lepra staff and trained community volunteers go door-to-door, village-to-village, to find the hidden cases and help change people’s perception of leprosy and other NTDs such as lymphatic filariasis (LF).

The approach takes time and resources but is highly effective, and vitally important to help control the spread of leprosy. It helps to reach the hidden cases, the people who would otherwise go undiagnosed. The people for whom the barriers to going to a clinic themselves prove too much: children, the elderly, the economically, socially, culturally and geographically marginalised – the people who need support the most. Active case finding reaches them and enables them to get the support they need.

In its first year, the ASPIRE project visited and screened every single village in the district, reaching 86% of all households. The result was more than three times the usual number of leprosy and LF cases being diagnosed. It is an impressive and important achievement.

Lepra will officially launch its new strategy in a YouTube premiere at 7pm on 20th November 2024. Dr Beatriz Miranda-Galarza, the ‘UN Special Rapporteur on Discrimination Against Persons with Leprosy’, together with other special guests, will discuss how ‘Health, Inclusion and Innovation’ will help Lepra deliver sustainable care for as long as they are needed.

To register your interest in the event, please visit: Health. Inclusion. Innovation. (lepra.org.uk).

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