Challenging prejudice and discrimination on World Leprosy Day 2019

by Geoff Prescott, Chief Executive, Lepra

Geoff Prescott, Executive Director, Lepra

World Leprosy Day 2019 comes at a time when leprosy at least appears to be gaining some publicity in the mainstream media. Recent articles about leprosy have been shared across India, as discriminatory laws, such as leprosy being grounds for divorce are finally being removed from the statute books there. However, there is far more work to be done to eliminate the prejudice and discrimination remain two of the biggest obstacles the leprosy community face in our battle to beat leprosy.

At Lepra, we feel it is important to acknowledge that “stigma” as a word does not cover the complex range of issues that people affected by leprosy face and can even imply that they are somehow “to blame” for their condition. Prejudice against the disease, leads to discrimination which can lead to financial and societal hardships and for the individual and their families and potentially mental health problems. Indeed 1 in 2 people affected by leprosy are also suffering with a mental health issue.

We will shortly be launching a new position statement and report, outlining our approach as we enter our 95^th year.

Our goals for World Leprosy Day 2019 and our 95^th year are twofold. Firstly, we are calling for more investment into research into leprosy, how it is transmitted and can be treated. When Lepra was founded in 1924, a cure seemed impossible to achieve, but with time and resources given to research, it was indeed found and we were one of the first organisations to use MDT in 1975.

Last year just $16m was invested into leprosy research. This is something that can and must change . Investing in leprosy research via facilities like our Blue Peter Health & Research Centre, should be seen by business and governments as a wise investment in people, benefitting of all.

Of equal importance is the need to tackle the discrimination that people affected by leprosy face head on, first by acknowledging and showing it for what it truly is– prejudice. This is ingrained and ancient, prejudice against leprosy seems to be built in to every facet of human life and could almost be seen as primal.

This prejudice can see them ostracised from their community or family, lose jobs, partners, education opportunities and even their home. It allows 157 laws to remain on statute books that directly discriminates against people affected by leprosy and influences decisions on investment and resources at the highest levels. This must change…Now!

To do this, we first need to change our own attitudes towards leprosy, how we use the disease and words associated with it. In the media, political arenas and in our day-to-day lives, language used can actually have a real impact on either sustaining, or ending this prejudice.

For example, in 2019, nobody should be called a “leper” or subjected to prejudice or discrimination because of a curable disease. Referring to a “leper colony” when leprosy colony would equally do the job can, however inadvertently reinforce that negative stereotype. People affected by leprosy are often called “lepers”, they each have a name – how many other diseases see those who are affected referred to by their disease?  This can cause terrible hurt to those affected and is dehumanizing to say the least.

Using leprosy as a cipher for a worst-case scenario, or a negative outcome is equally unacceptable. The phrase ‘social leper’ for example perpetuates the stereotype and reinforces the prejudice people affected encounter in their day-to-day lives. Other words are available such as “outcast”, “pariah” that have the same meaning, yet leprosy becomes the “easy one to use” and again reinforces the negative image.

Where even world leaders use leprosy as a means to describe unfavourable or worst case outcomes, this also reinforces that leprosy is the worst thing that can happen when it is simply untrue. When detected and treated early, leprosy is not only completely curable but disability can be avoided. It is less infections than many other diseases and 95% of us are immune. Leprosy is far from a worst case scenario, yet is allowed to be viewed and treated as one.

The genuine worst thing that can happen is to allow this situation to continue.

You can help change this by signing our petition at http://bit.ly/BeatLeprosyWLD and pledging to no longer use the word “leper” or use leprosy as a metaphor or expression of a negative outcome.

People affected by leprosy are entitled to the same dignity and respect we would hope for ourselves and we can change attitudes; it can be done! Reversing prejudice amongst individuals and institutions will lead to the day when we will beat leprosy…together!

Thought for World Leprosy Day - The Leprosy Mission

by Katherine Jones, Media and Communication Officer, The Leprosy Mission England and Wales.

World Leprosy Day is commemorated every year on the last Sunday in January. The day was chosen to coincide with the anniversary of Mahatma Gandhi's death in 1948. Gandhi was himself a champion of people affected by leprosy.

Leprosy is just one of many NTDs that still threaten millions of people worldwide today. Like other NTDs, it is usually the poorest and most marginalised who are most at risk. The Leprosy Mission is working with other NTD-focused organisations, including ILEP, World Health Organization, Novartis Foundation and Leprosy People’s Organisations as part of the Global Partnership for Zero Leprosy, a consortium striving to end this ancient disease.  The focus is around 3 main goals:

ZERO TRANSMISSION – ZERO DISABILITY – ZERO DISCRIMINATION

That leprosy transmission is stopped - over 200,000 new cases of leprosy are diagnosed worldwide every year, that is one person newly diagnosed every two minutes.

That the lifelong disabilities caused by the late detection of leprosy are prevented - over six million people worldwide suffer from serious physical impairments or mental illness caused by leprosy, many of whom require surgery or rehabilitation.

That the laws and practices that actively discriminate against people affected by leprosy are repealed or stopped - 157 laws across 29 countries actively discriminate against people affected by leprosy. Read more about leprosy related stigma and discrimination here from ILEP (the International Federation of Anti-leprosy Federation).

Within each of the Three Zeros, critical concerns need to be addressed if leprosy is to be defeated in our lifetime. 

We need investment in research to develop a cost effective early diagnostic test and to train both public and private sector health workers to recognise and treat leprosy. Government commitment to active case detection and early diagnosis is essential to stop the transmission of the disease. This must be achieved, ideally using cross NTD approaches, if we are to prevent impairments and lifelong disabilities - particularly in children.     

Recent data from the World Health Organization, shows that the proportion of children newly diagnosed with leprosy (out of the total of all people newly diagnosed) is a shocking 9%. This indicates that the transmission of infection is recent and ongoing in many poor communities. Yet it seems likely that the percentage is significantly under reported due to limited active case detection, and, that Government data collected for leprosy in children is based on a child age of under 15 years and not 18 years as per the UN Convention on the Rights of the Child.  We are failing our children.  

This World Leprosy Day, The Leprosy Mission calls on Governments, NGOs, Alice Cruz (The UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy), the World Health Organization, the Global Partnership for Zero Leprosy and ILEP members to address this under-reporting of children affected by leprosy and ensure the accurate reporting of child cases (under 18 years). Only when we have the correct data will programmes be able to assess the true situation and ensure services reach children most at risk; children like Mahendra.

Mahendra

In 2015 Mahendra's leg was amputated when he was 15

Mahendra is from Janakpur in the south-eastern Terai region of Nepal. Like most of the Nepalese population, his family farm for a living.

At 10 years’ old, he developed cracked, dry skin on his feet and lost the sensation in his toes. The cracks gradually enlarged, became infected and developed into ulcers which did not heal. His family took him to over 20 private hospitals to try to treat the condition, but the diagnoses were wrong, and the treatments didn’t work. Meanwhile his ulcers worsened, and he developed clawed fingers. By 14 years’ old, he had already lost several toes. He finally received a diagnosis of leprosy at Lalgadh hospital.

Upon receiving the diagnosis, Mahendra was rejected by his father and told not to return home from Lalgadh. He said, “my father hated me. He thought he would catch leprosy from me. He didn’t want me around.”  So, he stayed at Lalgadh where he was treated with multi-drug therapy. Although treated for the disease, the lack of sensation in his feet worsened and he continued to injure himself. At the age of 15, he suffered a severe fracture and was referred to The Leprosy Mission’s Anandaban hospital (for more information see Heal Nepal).

Mahendra was assessed by the doctors at Anandaban and told that the injury and tissue infection was too severe to be repaired or treated. He needed an amputation below the knee. 

In 2018 Mahendra had plastic surgery to his hand

After several months, he was ready to return home with a prosthetic limb made at the hospital. He hoped that his father would accept him, but he didn’t think it was likely.

Despite repeated phone calls, Mahindra’s father will not permit him to return home.

When Mahendra leaves Anandaban Leprosy Hospital, Neal, he will move to a leprosy community outside Kathmandu. However, his damaged hands may make it difficult for him to earn a living.  

Leprosy is classified as a Neglected Tropical Disease by the World Health Organization.

Leprosy is a mildly infectious, chronic disease caused by a slowly growing bacterium, Mycobacterium leprae. It can be completely cured by antibiotics known as multidrug therapy or MDT. If left untreated, leprosy causes immense physical suffering and disability, such as nerve damage, blindness and disfigurement of the face and limbs. Its characteristic lack of sensation can lead to injury and loss of fingers, toes or even limbs. The impairments, social stigma and discrimination often mean those affected experience poor mental health.

Interventions are wide-ranging and holistic, not just addressing the disease itself but also ensuring social inclusion and quality of life.  As well as medical work, areas of activity include counselling, housing, water, sanitation, education, employment, advocacy and empowerment.

The Leprosy Mission (TLM) is an international Christian development organisation striving to defeat leprosy and transform lives. It serves people affected by leprosy, other neglected tropical diseases and disability.  The England and Wales office currently focuses its work in 10 countries where leprosy remains both a chronic disease and a social challenge: Bangladesh, Ethiopia, India, Mozambique, Myanmar, Nepal, Niger, Nigeria, Sri Lanka and Sudan.

TLM works with organisations that are specialised in other NTDs to develop joint approaches to disease and disability prevention. NTDs which can be treated easily alongside leprosy include: lymphatic filariasis, trachoma and Buruli ulcer.