What is leprosy
Leprosy is a mildly infectious, chronic disease caused by the Mycobacterium Leprae. Leprosy bacteria mainly attack the skin and peripheral nerves.
First signs are numb skin patches and at a later stage nerve thickening accompanied by impaired function.
Leprosy can be cured with a combination of anti-bacterial drugs called MDT (Multi-drug therapy) which must be taken for 6 months (Paucibacterial type) or 12 months (Multibacterial type).
Common complications of leprosy are reactions – inflammatory episodes that can occur during and after treatment and must be treated promptly.
Transmission occurs from people with untreated leprosy by droplet infection if there is close and prolonged contact.
Leprosy is not transmitted by shaking hands or sharing eating utensils. It is not hereditary, nor is it caused by witchcraft, sin, or certain foods. Once MDT treatment has started, leprosy is no longer contagious.
Leprosy and leprosy reactions can damage peripheral nerves in the body. Nerve damage can result in loss of feeling, loss of autonomic nerve function (sweating), and loss of muscle function.
This can be prevented with early diagnosis, regular MDT intake, and prompt treatment of reactions.
Disability due to leprosy
People with loss of sensation in the soles of their feet or in the palms of their hands feel no pain when they injure themselves. Even a small wound left untreated can grow and become infected. This can lead to ulceration, bone infection, loss of fingers and toes through absorption.
If the motor function of certain nerves is damaged, muscles in the hands or feet lose strength. Over time, the fingers become bent and stiff. Hands and feet with weak muscles are at risk of injury.
Muscle weakness can also occur in the eyes. This is dangerous because the eyes cannot be fully closed and are therefore easily damaged. Damage to the eye can lead to blindness.
Leprosy-related disabilities can be prevented by timely and regular treatment of leprosy. Health workers must monitor patients during treatment and ideally for years afterwards to detect and treat reactions. People affected by leprosy must learn to recognise the first signs of reactions and impairments. They need to be guided and motivated to carry out self-care to prevent new impairments and worsening of existing impairments.
Stigma and discrimination
Misconceptions about leprosy lead to stigmatisation and discrimination in society. Even today, leprosy-related disability is very often seen as proof that leprosy is incurable. Even without visible signs of leprosy, people develop self-stigma just because they are diagnosed with the disease.
Although discrimination due to leprosy is less common today than it was 10-20 years ago, it still happens that people affected by leprosy are excluded from their families and isolated from the village community or that children are sent home by the teacher. People affected by leprosy find it difficult to find a partner and prefer to hide the fact that they once had leprosy.
Information about leprosy is key to correcting misunderstandings. Ideally, people affected by leprosy are involved in dissemination of information, as they can tell their own story. In addition, active participation in awareness campaigns helps them to regain their self-confidence and overcome self-stigma.
Global goals in fighting leprosy
‘Towards Zero Leprosy’ is defined in the strategy’s long-term vision as:
- Zero infection and disease
- Zero disability
- Zero stigma and discrimination.
Elemination of leprosy
In 1990, the WHO Global Leprosy Programme (GLP) defined ‘elimination of leprosy as a public problem’ with a registered prevalence of leprosy of less than 1 per 10,000 population. Many countries achieved this target.
Unfortunately, this led to the belief that ‘elimination as a public health problem’ meant that leprosy was now a problem of the past. Resources for leprosy programmes and leprosy research were seriously reduced, causing major problems in continuing leprosy services and in attracting researchers to address the many remaining research challenges. This led to a widespread aversion against the term ‘elimination’ in connection to leprosy, especially among civil society organisations, including organisations of persons affected by leprosy.
Today, the target of elimination of leprosy disease as a public health problem expressed in terms of prevalence of leprosy cases on treatment is no longer used. Instead, the WHO framework of elimination of leprosy distinguishes three phases:
The following levels of endemicity are therefore recommended for use at national, state/province and district level:
High endemic: Countries or areas that are in Elimination Phase 1 (before interruption of transmission)
Low endemic: Countries or areas that are in Elimination Phase 2 or 3 (after interruption of transmission)
Non endemic: Countries or areas where no or only sporadic autochthonous cases have occurred for at least 10 years
Leprosy in Indonesia
Indonesia ranks third in the world after India and Brazil in the number of newly diagnosed cases. The number of registered leprosy cases in 2021 was 13,487.
In 2021, despite the reduced case finding activities due to the pandemic, 1133 children with leprosy were found. Indonesia is thus in phase 1 according to the WHO elemination framework (high endemic).
Leprosy affects people even after they have been cured of the disease. The cumulative number of persons affected by leprosy in Indonesia in the last 10 years alone is at least 170,000 cases.
Documents and reading
Speech by Yuliati, Vice Chair PerMaTa and Board YDTI on the Bergen Conference 2023
Poster Presentation, Bergen 2023: How people affected by Leprosy can investigate human right violations. A study in South Sulawesi, Indonesia, March-May 2022
YDTI – PerMaTa South Sulawesi: Persons affected by leprosy in Indonesia investigate human rights violations (WHO Goodwill Ambassador’s Leprosy Bulletin August 2022)
UPR – FACT SHEET: Human Rights for Persons affected by leprosy in Indonesia ( YDTI – PerMaTa South Sulawesi, August 2022)
Universal Periodic Review- People affected by leprosy Indonesia 2022 (by YDTI – PerMaTa South Sulawesi)
Problems of access to health services for people affected by leprosy in Indonesia (Policy Brief by YDTI – PerMaTa South Sulawesi. Desember 2021)