Monthly Archives: February 2020

Lepra’s New Faces of Leprosy exhibition

In March, Lepra will be exhibiting the New Faces of Leprosy at the Seacole Social Cafe at the London School of Hygiene & Tropical Medicine.

The New Faces of Leprosy 2020 was shot by professional photographer Tom  Bradley – who will be teaching a segment on cell phone photography to the ILEP Communicators Network at the ILEP Conference. Attendees of the ILEP Conference can also see some of the pictures from the exhibit at the Holiday Inn, Brentford Lock.

This exhibit focuses on people living ordinary lives, despite their leprosy diagnosis. The aim was to highlight that those with families, careers and from all kind of background can still get leprosy. The project was funded by a grant from the London School of Hygiene and Tropical Medicine.

Professor Diana Lockwood, led the first New Faces of Leprosy 2019 to advance a positive image of leprosy, and recently spent several weeks in India, meeting people affected by leprosy and listening to their stories. These stories, along with accompanying photographs, were collated into The New Faces of Leprosy project which was formally launched on the 28 January 2020 at The House of Lords, London.

The New Faces of Leprosy project hopes to dispel myths about leprosy and highlight the resilience and determination of people affected to continue their lives.

GPZL is in the top 100

The GPZL’s bid for the MacArthur Foundation’s US $100 million 100&Change prize – co-designed by a consortium of ILEP Members – has been placed in MacArthur’s top 100 proposals. Read more about their bold solution here.

The Foundation will now start on a process linking GPZL with new donors, which is a strong boost to its resource mobilisation work. Meanwhile the due diligence processes continue, and in due course we will know whether the bid has reached the top ten. You can read more about all of the top 100 proposals here.

TLMTI’s work recognised by the President of India

On 6 February 2020 The Leprosy Mission Trust India received the International Gandhi Award 2019.

The President of India, Shri Ram Nath Kovind, the Minister of Health, Shri Harsh Vardhan, and the Minister for Social Justice and Empowerment, Shri Thawar Chand Gehlot, conferred the International Gandhi Award 2019 (institutional category) on The Leprosy Mission Trust India (TLMTI), in recognition of its long-standing work with people affected by leprosy.

Mr Bhal S. Chakranarayan, Chairman of the Board of Governors of TLMTI accepted the award on behalf of the organisation. The International Gandhi Award is given by the Gandhi Memorial Leprosy Foundation, Wardha, Maharashtra, and is given once every two years to organisations working with people affected by leprosy helping them to live with dignity.

The International Gandhi Awards for Leprosy commemorates the compassion that Mahatma Gandhi possessed and his services towards people with leprosy. The awards aim to recognise the outstanding work by individuals and organisations to fight leprosy and eliminate the prejudices associated with it.

To read the address by the President of India on the occasion of the presentation of the award click here.

Efforts to protect rights of persons affected by leprosy must continue

Message to Japan from UN Special Rapporteur on Elimination of Discrimination against Persons Affected by Leprosy

The following is a media advisory from UN Special Procedures

TOKYO (19 February 2020) – “Japan has achieved remarkable progress in protecting the rights of persons affected by leprosy and these efforts must continue,” said Alice Cruz, UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, after concluding her eight-day visit to the country.

“I welcome the strenuous efforts made by the Government of Japan, in close cooperation with civil society, which is a good example in eliminating the discrimination and prejudice against persons affected by leprosy (also known as Hansen’s disease) and their family members. I urge the authorities to continue and sustain their efforts on international cooperation, especially in the area of protecting the rights of older people,” Cruz said

“I acknowledge the progress made in protecting the rights of this marginalized group in Japan, especially through the Kumamoto district court decisions of 2001 and 2019, as result of a tireless consolidated struggle by affected persons and their family members. I commend the Government for responding to the voice  of affected persons by recognizing its responsibility for past violations  of their human rights, offering a public apology and compensation, and putting in march a multisectoral approach to Hansen’s disease.

“However, systemic change is difficult to achieve and stigmatization at the society and community levels, still exists. While a considerable number of affected individuals have left these institutions over the years, today some 1,100 persons who were segregated by force still live in 13 sanatoriums. With the average age of 86 years, many of them are living with physical and psychosocial impairments, as well as disabilities related to Hansen’s disease. They were dehumanized by the forced segregation and sterilization policy, which continued even after the disease, has become curable. They still struggle to restore their dignity and their family ties broken by decades-long institutionalized discrimination,” Cruz said.

“Efforts should be strengthened to expand the scope of reparation programmes in order to ensure effective healing; sustain leprosy-related medical and nursing knowledge; guarantee the rights to freedom of expression and legal capacity; provide support services, high quality care and counseling; create environment favorable to rebuild family relationships; and support the application of Nagashima to UNESCO world heritage,” she said.

“Health care services and counseling should be provided on an equal basis in and outside sanatoriums. Affected persons should make free and informed decision about their future, any health matters and palliative care,” the expert said.

During her visit, Cruz held consultations with representatives from relevant Ministries as well as with representatives of civil society organizations, law and health experts, and academia. She visited the Hansen’s Disease Museum, the National Institute of Infectious Diseases and the national sanatoriums in Tokyo and Nagashima. She listened to valuable testimonies by several persons affected by Hansen’s disease and their family members living in and outside sanatoriums.

The Special Rapporteur will submit a comprehensive report, including findings and key recommendations, to the UN Human Rights Council in June 2020.

ENDS

Click here to read the End of Mission Report.

Alice Cruz is the first UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, appointed in November 2017 by the Human Rights Council. Ms. Cruz worked as External Professor at the Law School of University Andina Simón Bolívar – Ecuador and in several Portuguese universities as researcher on health and human rights, in particular leprosy. She participated in the elaboration of WHO Guidelines for Strengthening Participation of Persons Affected by Leprosy in Leprosy Services. She has researched and written on the subject of eliminating leprosy and the stigma attached to it and has interacted with various stakeholders, including persons affected by leprosy.

The Special Rapporteurs are part of what is known as the Special Procedures of the Human Rights Council. Special Procedures, the largest body of independent experts in the UN Human Rights system, is the general name of the Council’s independent fact-finding and monitoring mechanisms that address either specific country situations or thematic issues in all parts of the world. Special Procedures experts work on a voluntary basis; they are not UN staff and do not receive a salary for their work. They are independent from any government or organization and serve in their individual capacity.

G-FINDER Report 2019

The 12th annual G-FINDER report, published by Policy Cures Research at the end of January, is an annual global review of research funding into NTDs and it contains mixed messages.

Total NTD funding increased for the third year in a row. But funding for the six most neglected diseases – including leprosy – fell. Leprosy research funding, at US $10 million, is at the lowest level for seven years. Half the leprosy research funding came from National Institutes for Health (US) and the Indian Council for Medical Research. ILEP Members and LRI contributed 20%.

The full report is an interesting read and enables you to compare investment in leprosy research with other NTDs. There is also a 6-page summary.

WHO draft NTD Roadmap

The World Health Organization’s draft Roadmap on NTDs is now online. It sets out a comprehensive plan outlining targets for prevention, control, and elimination of infectious diseases locking a large part of the world into a circle of poverty and poor health.

The original group of 17 target NTDs presented in the proceedings of the highly influential WHO meeting on ‘Accelerating work to overcome the global impact of neglected tropical diseases‘, was enlarged in 2016 to 20 diseases, now including infections due to helminths, protozoa, fungi, bacteria and viruses.

Additionally, a consultation has been initiated by WHO on a sustainability framework that will accompany the Roadmap. Through the consultative process it was understood that the roadmap would benefit from an investment case, a sustainability framework, and a monitoring and evaluation framework.

WHO now invites all stakeholders to fill out a short questionnaire towards developing the sustainability framework. It should not take more than a few minutes and your contribution will be highly appreciated. The survey questionnaire can be found here and will be open until 6 March 2020.

The gender dimensions of NTDs

Gender can affect who gets preventive medicines, who is diagnosed and treated, and who is exposed or vulnerable to NTDs.

A new discussion paper by the UNDP-led Access and Delivery Partnership highlights gender inequities in NTDs and what can be done about them. Recommendations include ensuring that programme design takes into account how gender impacts on all aspects of NTD treatment and care, and addressing gender-based stigma and mental health effects of NTDs.

The world celebrated the first World NTD Day

The first World NTD Day took place on 30 January 2020. This date was the beginning of a year long push to get attention on NTDs.

In May, at the World Health Assembly, the NTD Roadmap will be launched. In June, the Kigali Summit will call on global leaders to deliver political commitments and to mobilise new financial commitments of US $1.5 billion to accelerate progress towards the total costs of delivering the WHO NTD 2030 Road Map and will build on the success of the 2012 London Declaration. In September, NNN (the NTD NGO Network) will be celebrating the success and embracing the new WHO NTD Roadmap.

The Lancet also talked about the push “to gather support and build momentum for a decisive year of action against NTDs”.

To see coverage about World NTD Day, visit the following links:

Q&A with Amar Bahadur Timalsina

Amar was diagnosed with leprosy during the early years of his life and was rejected by his community as a result. From 1989 to 1995 Amar was successfully treated and his experience inspired a fierce desire to advocate for the safe rehabilitation of people affected by leprosy in their families and communities. Amar works as a school principal in Kathmandu, Nepal and plays a big role in IDEA Nepal, a national organisation of persons affected by leprosy.

The Universal Declaration of Human Rights is something that Amar believes will help leprosy affected people gain rights and fight against discrimination, especially in institutional settings.

  • Article 21: Everyone has the right to take part in the government of his country, directly or through freely chosen representatives.
  • Article 25: Everyone has the right to a standard of living adequate for the health and well- being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.
  • Article 5: No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment.

What does leprosy mean to you?

For me, leprosy came as a boulder that stopped me on my path. I had to struggle so much that my energy and my will was almost gone. To put this differently, my initial perception of the disease was not so different from what society understood it to be. Later on, my perception changed when I was completely cured. Thus, leprosy is a big thing that shaped my path of life. It has changed the course of my life.

I do not know what I would be doing if I had not been diagnosed with leprosy. For this reason, I have a positive connotation of leprosy and it is the instrument that shaped the course of my life.

Most people are not able to say they have a positive connotation of leprosy. What happened to make you feel that it was a positive experience?

Even today, many people do not want to be exposed to leprosy. But what happened to me because of my education and to some extent I can say financial freedom that helped me to bring the positive vibe or positive connotation regarding leprosy.

Right now, I am a principal of a school and my school is in Kathmandu. I’m running my own school with 400 students and 25 staff. So, people see that a leprosy affected person can have a profound impact in society. They have seen that I have become the principal of our school and I’m holding different posts – on the Advisory Panel of ILEP, on the Board of The Leprosy Mission International – in different organisations. That made people think more positively.

Would a woman have been in a different situation than you?

Of course. Yes, especially in the context of Nepal and India.

Leprosy causes stigma, right? I am in Nepal and Nepal is a male dominated country. Females are, to some extent, dominated by men. So, if the women are affected by leprosy and they are more dominated by men their situation is very different.

You mentioned that there is stigma to leprosy. What does stigma mean to you?

Stigma is that thing that needs to be immediately kept in Pandora’s Box. Stigma in the real world does no good to anyone. Especially the stigma to the people affected by leprosy is sheer nonsense. There is no reason why the people affected by leprosy need to be undervalued or taken as someone who is less.

For me leprosy is a disease as common as headache and toothache in the sense that it is completely curable and a person can remain as normal as earlier once the treatment is carried out in a timely manner.

In this sense stigma is a phenomenon that is a ghost. Some humans are using it for their inhuman attitudes. I have suffered a lot in my life. Therefore, I have learned never to underestimate anybody else. We are raising our voice to regain the lost dignity of people affected by leprosy.

How have you been affected by stigma?

I was compelled to leave my birthplace. I was compelled to leave my school. And I was even forced to sign divorce papers due to the extreme stigma of this disease.

This happened in the past. Now it has a positive connotation for me. When I suffered from leprosy at that time, you know, I never thought my life would be in this position now, right?

Because when I suffered from the disease at the time the stigma and discrimination, it was too much. Later on, with the help of education and financial freedom I was able to change the perception of the community, of society and that helped me to stand in this position now.

Do you think people are changing the way they treat people affected by leprosy?

They are changing but still we need to do a lot more.

We need to create awareness that people affected by leprosy have feelings. They think that leprosy is not a simple disease. We have to change the perception of the community and society. We have to reach them.

How would you suggest that we go about making people aware?

Leprosy affected people like myself and so many other brothers and sisters, we have to come up and reach out to the community. We have to reach out to the wider community with a strong voice that leprosy is a simple disease and we should not be discriminated at any cost.

For example, in Kathmandu, Nepal, I have been running a school. Since I run a school I have to pay the tax. Our government should not treat me as a second class citizen. We should be treated equally.

What are the misconceptions that have affected you?

The misconceptions that affect me the most are people’s belief that leprosy is the result of the past life sins. Another one is that a person who has leprosy can be discriminated against and cannot be integrated into society. These two misconceptions irritate me the most. I have challenged both of these misconceptions. After I got cured people neither believed, at least around me, that it is the result of the past life sin nor that a person is to be isolated. I feel now that I have lived a dignified life, perhaps better than normal people. I do have a life that I call a new normal life.

What does it mean to you to have this new normal life?

It means that now I am not discriminated against. I have regained my lost dignity, I live in the same community, and am integrated with other people.

Our life should be the life of examples, right? What I want to suggest to all of the people affected by leprosy – we need to be the role model so that we reach the wider community with the message that leprosy is a simple disease and we should not be discriminated, at any cost.

Do you think that medical professionals understand leprosy?

Since I am from a remote part of Nepal, the health assistants in my village didn’t understand leprosy so well at the time. They referred me to the city hospitals. After going to many hospitals, one after the other, I was finally sent to the Leprosy Mission Nepal where I was diagnosed with leprosy.

What I can say is that even today medical professionals do not understand leprosy and our situation well enough. They understand, but they do not understand well enough.

Leprosy expertise is declining. The expertise in the field of leprosy should be increased. We also have to provide training because many people, many health professionals, are getting old, they are retiring from their jobs. We have to give trainings to the young generation so that they can develop the expertise themselves.

They [the medical professionals] have some kind of knowledge but they don’t understand the real pain and suffering of the people affected by leprosy.

I think that other medical professionals, not only in leprosy hospitals, should be given basic training on leprosy. In Nepal many health professionals do not have enough knowledge of leprosy. Other medical professionals working in the general hospitals should have training on leprosy so that if patients with leprosy go there, they can also be diagnosed in the hospitals.

What changes have you seen in the last decade that gives you hope?

I think that comparing the last decade, leprosy affected people have come up. The dignity of people affected by leprosy has been raised.

Now we have access, we can go and talk with the government. Before we didn’t have our own organisation. Now, we have the organisations of people affected by leprosy and we can raise our own voice. The voice of the leprosy affected people also can be heard because we go to many doctors, many hospitals, visit government people and they listen to us. A decade ago, it was very difficult.

There has been a change happening and also the Nepal Government is working a lot. Recently we conducted an in-depth review of leprosy in Nepal, with the help of all the stakeholders. But still there is a discriminatory law in Nepal. For example, if I say I am a person affected by leprosy, my wife can give me divorce. The organisation of people affected by leprosy, IDEA Nepal, is working very hard to raise our issues to abolish the discriminatory law.

What I feel, after the treatment is applied to the people affected by leprosy, the next biggest challenge today is the discrimination and their reintegration into society. So, the financial freedom for the people affected by leprosy must be provided so they can have the dignified life. This is the most essential thing I think.

If the world was a perfect place, how do you see things being different for people who will be affected by leprosy tomorrow?

Yeah, I think that we need to give big boost now, right?

We need to give big push now from the medical aspect, and the social aspect and even in the stigma area.

That we all should be free of stigma, free of isolation from all the perspective and angles right and we should we should be able to go ahead.

I just want to add that we are also human like any other citizen of our nations. Respect us like other people in the community. Do not treat us as the second-class citizens of our nation. I just want to convey this message. For the people affected by leprosy around the globe, I just want to convey the message that we have to speak for ourselves. If we do not speak about ourselves who will?

I would like to request to all the people, all my dear friends to come and have a strong voice and raise your voice yourself so that the government, other NGOs and all the community people have to listen to our voice.

**Conversation was edited for publication**

Q&A with Rachna Kumari

Rachna Kumari works full time at the Lepra Society’s Munger Referral Centre in Bihar, India. She has an advanced diploma in health assistance and nursing and is studying for a bachelor’s degree in sociology. 

Rachna’s goal in life is to help other people with leprosy. She does this every day with rare patience and compassion teaching people how to care for themselves through a set of practices. She is also a key member of the State Forum of leprosy affected people in Bihar, through which she helps raise awareness in leprosy colonies and advocates for their rights to a life of dignity.

Rachna’s work and experiences representing herself as a leprosy affected women from India have led her to defend the Universal Declaration of Human Rights. She refers especially to Articles 16: Men and women of full age, without any limitation due to race, nationality or religion, have the right to marry and to found a family. They are entitled to equal rights as to marriage, during marriage and at its dissolution; and Article 5: No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment.

What does leprosy mean to you?

In the medical sense leprosy is a chronic infectious disease caused by Mycobacterium leprae. Outside of medical science, in our community leprosy is the untouchable disease. People are thinking, he had suffered from leprosy, that means that in his past life, you did not do good work, then you receive this disease. Our community is thinking – suppose I had suffered from leprosy, please go, go outside and don’t play with her, and don’t eat with her, and don’t do anything like cooking, playing, reading, anything with her because she suffered from leprosy. I am not touching her. Suppose I am cooking. This is not good because I am cooking, so I touch the food, and prepare the food. So, this food is not good. Those people are thinking, I am eating so this is in contact with me. In our community the meaning of leprosy is abused, it is discrimination, and stigma, and untouchable, and please go out, is thought by many people.

After I was cured, how I see my life at this time, I see that my life is much happier. I am so happy with my family because this time I start a new chapter of my life. I have met one good person, a good man, and I get married to him, then my family is happy, my family is complete. My past is gone, I forget all things. I don’t remember, but sometimes your past moments are repeating in your mind. But now I am happy, so happy.

What does stigma mean to you?

Stigma is a very curable thing in my life, and those people’s lives who suffered from Hansen’s disease. Because any people, suppose like my mother, my father, my neighbour, children – anyone can stigmatise you. At that time the pain is very hurtful because I am not expecting this. These are my family and these are their reactions. Why? Because I suffered from leprosy. These people are thinking, I touch you, I sleep with you, I come with you, I contact this disease. I had suffered from leprosy and at that time I’m always thinking in my mind when I saw anyone, I feel their reaction, their language, their activities, I feel those people are stigmatising me. So that time is very much panic for me, very painful, and very suffering, when they stigmatised me.

What do you think are the misconceptions that affect you the most?

The misconceptions are that this is the untouchable disease, this is not a curable disease. People think I did bad things and bad work in my past life. No, this is not the fruit of the bad things that happened in the [previous] past birth. In our rural areas, those people are thinking it’s the bad work in the old past life, so she suffers from this disease. People are always thinking this is not a curable disease. Those people are not aware leprosy is curable, not an untouchable disease. This is the main thing, and they are not aware of the medicine. That you go there and take the medicine, free of cost. And some reconstructive surgery is free of cost. People are not aware, not in urban areas, not in rural areas.

Do you think that the medical profession understands leprosy and your situation well enough?

In our community, I saw some doctors are untrained in leprosy. Suppose you transfer into my district and slowly you learn about what leprosy is, and about this work. Then the doctor is transferred to another district. Then again the next doctor is coming and again working and learning, and then, transferred. Some doctors know about leprosy and what is the early detection, so they know what problems these people are facing. But even knowing about everything, the doctor does not touch you. See he’s scared.

What do you think needs to happen to make this better?

Awareness is really important. I think everybody, every man and woman who reaches the government hospital and private health clinic need to know about leprosy in India. So, we can put some positive images on the wall and then some points are written.

She is diagnosed early, early detection, and she is much happier. Now she is cured.

Then what happens is every person going to the government hospital can look at the wall and see the point, and think this is good. So, we are not going to one house at a time and telling that the leprosy is curable. But the wall pictures are saying this to everybody reading the points and looking at this picture. Minds are, I think, changed. Anyone – poor man, rich man, woman, child, younger girl, sister, boy, anyone. I think, some change comes quickly. In our community I saw people are not aware, people are not educated, so the problem is very big.

What is the one thing that needs to be done now?

Not any one thing can change the mind and can change all things. It is important for everyone to know about leprosy so that maybe can change the people’s minds. Awareness is very important. Because without awareness your mind is not changed.

What do you do at Lepra?

My work is community mobiliser. It is a multi-purpose work. Sometimes I go to the field. Sometimes that means I go to the development officer. Sometimes I go to the Welfare Society. Sometimes I go to the hospital. Sometimes people are coming to my Lepra centre. I am counselling, I talk about the self-care and diagnosis. I love it, because I know what is the pain. Because I suffered from everything, so I want those people to not suffer for these things. I’m happy with my job, my work, because those people are happier. I see their face, and I am so happy. I’m so happy with my job, my work, because I change someone’s life, some other life. So, I am so happy. I had suffered from the stigma and discrimination, all things, economical problem, mental problem, depression, so I don’t want anyone to suffer this.

There was the time I suffered with the Hansen disease, but now I am the example for all woman and I struggle in my life and struggle with the disease, struggle with the economic condition. Then I achieved this platform and I am here only, not only me, but on behalf of all women, all women’s voice.

**Conversation edited for publication** 

Q&A with Paula Soares Brandão

Nurse and teacher Paula Soares Brandão discovered she had Hansen’s disease during her last term in nursing at the University in Rio de Janeiro in 2002. At first she felt some numbness on her upper thigh. After several months of inconclusive tests, Paula was diagnosed with indeterminate Hanseniase. In 2009, Paula began her master’s degree, and continued to research Hansen’s disease for several years. In 2015, Paula began a teaching career at the Nursing University of Rio de Janeiro, where she ensures that all of her students are well-educated on Hansen’s disease.

As a supporter and participant in MORHAN (Movimento de Reintegração das Pessoas Atingidas pela Hanseníase) or Movement of Reintegration of Persons Afflicted by Hansen’s disease, Paula has spent more than a decade supporting and advocating to make certain articles of the Declaration of Human Rights are a reality in her work and through MORHAN. Particularly relevant for Paula are Article 5: No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment and Article 21: Everyone has the right to take part in the government of his country, directly or through freely chosen representatives.

Why don’t you tell me a little bit about yourself.

I am Paula and I was diagnosed when I was 22 years old. I was in the last period of the college of nurses. Now I am a nurse, and I am professor.

What does leprosy mean to you?

I never say leprosy because in Brazil we say Hansen’s disease. Leprosy for us means stigma. Okay, because the word of leprosy is a Biblical name and when you say leprosy or you say leper, you say these people are marginalised people. It’s a not good name.

When I got my diagnosis, the first thing in my mind was, I have leprosy. But ‘I have leprosy’ means bad things will happen. My family will segregate me, my friends will segregate me, my work will segregate me. Then I understood I didn’t have leprosy, I had Hansen’s disease, because the time is different. Leprosy is a historical disease. Hansen’s disease is the current disease, the curable one. I think leprosy is a stigmatised disease. When I think about this and when I fought this, I became very depressed and I become shy and it’s no good. But when I knew the group from MORHAN and other people that have Hansen’s disease, I think it’s not a problem because the disease is curable.

What does this disease mean to you personally?

Hansen’s disease changed my life, because I was one Paula before the disease and I was another Paula after the disease. I now know other people with Hansen’s disease, the social movements, the work, and talking to other people about my experience and why this is important for me. Because I have the possibility to help other people and when people suffer from the stigma or have self-stigma, you need to choose to change this situation. I have the conditions to change the situation because I have a good family and familial support. I have good friends and their support. I have a profession and the support from them. And I think the stigma is a situation society creates. It’s very complicated because for me the worst part of the stigma is the segregation. It’s, for me, the worst because in my conception it’s not possible one person lives alone in life. You need other people, you need to love, you need to care.

When I was sick, I suffered the stigma but it has not affected my life as it has affected life for other people. For example, I have one friend and she didn’t know that I have Hansen’s disease. I visited her house and she said to me and her mom, oh Paula see the spots on my mother? I think this is leprosy. If my mother has leprosy she can’t see my baby (because my friend was pregnant at this time). And when she said this thing, I didn’t have the courage to talk to her about how I was sick, that I had Hansen’s disease.

And not only this, when I took medication I had Hansen’s reaction. And I had treatment for reactions and I changed [because of] the treatment. My skin is very white and there was a change in my colour of skin and everybody asked me, wow, Paula you have beautiful skin. I know that everybody was thinking about this and I said to everybody I was going to the tanning machine.

Another thing, I became fat with the medication. And for me it changed my life because in Brazil the woman needs to be a beautiful woman, I feel. I was so young when I had it, I was 22 years old, and it’s not good for me because the boyfriends, the friends, everybody asks why you are fat. What happened? And, for me, it’s not good.

Did you find that the stigmatisation that you had didn’t come from outside, more it came from within you?

Yes, but I think I had self-stigma only in the first moments. The impact of the diagnosis when the doctor said you have Hansen’s disease. In my mind, I have leprosy in the first moment. But after two days I think, no it’s a curable disease, not a problem.

And then I told my family. My father said for me, daughter it’s better you have Hansen’s disease than you have cancer. Because Hansen’s disease is curable and my father, when he was young, he had tuberculosis. For him, this is not a problem. After my parents, I told only good friends. After that I told my work colleagues.

The health minister in Brazil invited me to record a video in 2006. This video is a story that many people have Hansen’s disease, the life doesn’t stop, and [it has] the stories from women’s and men’s view on having Hansen’s disease. This video was distributed only in my city initially. But the health minister decided to distribute the video for all the country. After this, everybody knows me because of the video. The first time I see the commercial I think, oh my God people they now know about how I was sick. But the people hug me and are careful with me after this.

What misconceptions do you think have affected you most?

I’m very sad when I see people segregating other people. I’m sad. When you have the segregation, I think that it’s possible we change this. We are the people affected by Hansen’s disease but we are the citizens, we are the persons, we have a life, our friends, our family, marriage or a boyfriend/girlfriend, we are human. We are human, not an animal or something, we are a people, only people, and we can only be happy and live our lives.

Do you think that the medical professionals understood Hansen’s disease properly?

Yes, in Brazil. Yes, but it depends on the area in Brazil because we have some places where the diagnosis is later and the professionals have the prejudices with the patients.

What is the one thing that you think needs to be done right now?

I feel I have a mission. The people affected by Hansen’s disease in MORHAN and Nepal and other countries, we are special because we have a voice. We bring our voice and we need to show the society, the medical profession and all the society, that what we need is respect of our rights. What we can do, we talk about our problems, our decisions, our rights and we fight for this.

Human rights are affected by the policies, the political attitudes. We are vulnerable people and in many countries, we don’t have the power of governments. We want the right of the voice. And for us this is important because it’s not only me, individual social participation, but social participation for us. Everybody needs to have the same rights. I feel a better world, a better country, a better community and we fight to improve this.

I think women and the children suffer more than other persons, because when you are a woman, your rights depend on the society. In Brazil there is discrimination. You need to fight more for your rights because you needed to fight for education, for healthcare, and you need everyone to fight for you when you are woman.

**Conversation was edited for publication**

Q&A with Kofi Nyarko

Born Jackson Jonathan Nyarko, Kofi was given this nickname, which means ‘born on Friday’ in Twi, a Ghanaian language. He is Headmaster of St. Elizabeth’s Special School in Elimina, Ghana, which provides education for children with special needs. Kofi was diagnosed with leprosy at the age of 10, by which time he had irreversible physical effects from the disease. As a result of being rejected by his classmates, he decided that when he had completed his schooling, he would help other people in situations similar to his. Kofi is a member of the Board of Directors of IDEA, an international organisation of persons affected by leprosy..

Because of his experience of being affected by leprosy and his work within the leprosy community and outside of it, Article 26 of the Universal Declaration of Human Rights is very important to him – Article 26: Everyone has the right to education.

Tell me a little about what leprosy means to you?

In Ghana, leprosy is a disease. It’s just like any other disease. And it’s curable. That is what leprosy means to me.

Do you find that there is a different thought process for leprosy than there are for other diseases?

Years ago, there was, but now here in Ghana it’s just like any other disease. The best difference is when you get it, you go to hospital right away.

What does stigma mean to you?

The stigma is whereby people reject you. But apart from that, when you get leprosy, and people come to you, you do your business, you do your work as normal. You don’t feel that even you have leprosy. But, if people start to reject you, if you want to work with them they refuse, if you want to send your kids, they refuse. There you feel very strong stigma. Apart from that, it is just like normal life.

You don’t find that that leprosy has a different concept in people’s minds?

Some years ago, I did, but from the year 2000 things started changing in Africa, in West Africa, in Ghana. People go to new doctors. They know it is not a curse. At first people thought it was a curse, you see? But we want people to know that it’s bacteria and it is curable. And so, if leprosy is curable, to stop the discrimination.

Why do you think that this is not the case?

You know, the other countries they have leaders and we have the community chiefs. Their opinions matter. If we convince the leaders that leprosy is like any other disease, if these people [people who are leprosy affected] also involve themselves, this stigma and discrimination will go away. And then the inclusion they have to improve, they have to reunite themselves into the society. If you get leprosy or if you had leprosy and you are staying in the leprosy colonies, you are still putting this [stigma] in people’s minds. The moment you go into the society, you will include yourself every time and thereby you are among them, in your community too, you join them. You know most people think men don’t even get leprosy only females do, which is wrong. So many people, I use myself as an example, I set an example and was bullied and then established the first specialised school in my region. This school is helping so many people. So, when you get leprosy or you had leprosy you have to focus even if people will discriminate against you, but keep on trying.

Is there enough education out there?

Yes. You know in West Africa, the chiefs have power. So, when powerful people speak, people listen. If you want to go to a community and educate the community, the first thing you have to do is go to the chiefs, to their palace with a bottle of schnapps. Second, you tell them your mission and then you will listen, and then they will give you a platform to speak.

Do you feel that there are misconceptions?

Yes, people get the wrong information. People get the wrong information like leprosy is not curable.

Have any of these misconceptions affected you?

Yes, at the beginning. At the beginning, but now it’s no more.

Would you would you say that it is your personality and your willingness to talk to everyone that has changed people’s minds in your community?

Yes. Yes, especially in myself. When people saw that I have leprosy, why I’m doing it [talking to everyone about leprosy]. People asked me a lot of questions on leprosy. And then I was treated normal again. That when you get leprosy, that is not the end of your life. You can do everything, and you can cure it right away. And in getting the cure, it’s very important.

What is your advice for other people who have been affected by leprosy but have been stigmatised?

The advice that I would give to these people is, they should not give up. It takes a lot of time and they should not shy away. Any chance you will get, you should talk about it. In the office, in school, in church, any place that you will get the chance to talk because, our independence is important and we have risked this much. I just use this opportunity to speak, any media, any radio station, any television that I will get a chance to go, I will use it to speak. Do not give up and they should include themselves in society. This is the advice that I will give it to them. Inclusion is very important.

How would you suggest that people with leprosy deal with their families?

Some of the families at the beginning thought it not curable. So, they are afraid. They stop talking and taking action in their communities. So now, they need to use themselves as an example to educate their community and be a family. And gradually, gradually, gradually, their kids will understand better.

Do you think that medical professionals understand leprosy well enough?

Some do. Some do, but not 100%. Even I myself have seen them miss in the general hospital. Every few months I get an opportunity to speak to doctors, professors, some are old members, some are new, some come because of money, some come because of their work, so they need more education. They need more education to understand leprosy.

Do you think leprosy needs to be on a general curriculum?

It needs to be general curriculum. And it needs to be added into the syllabus. Because I had this leprosy for 13 years before I was diagnosed. Nobody thought of leprosy. They were checking into other diseases but they did not know about leprosy. This caused me to come out to help people know what the symptoms of leprosy are so that anyone, any person who comes, you see the signs and you refer them to the general hospital.

Tell me about your work to help people that are affected by leprosy.

Most of it is that I am helping people go to everyone in their communities. Asking people where they come from. Getting information and taking it into their families and into their communities. I have been doing this for so many years, since 2003.

What do you hope that people will remember about your story?

A lot of people will remember my story, especially when they saw I was travelling to UK. I was looked at upon without trust at first. But gradually, we saw that I have become a star in Ghana, and not in Ghana alone, soon the whole world.

Do you think there is one thing that needs to be done right now?

Yes. The one thing that need to be done right now is inclusion. You do not need to be in leprosy colony, that one will not help you. Being put in a particular place, it makes more stigma and discrimination. We need to go back into society, we have been cured for so many years. We do not need to be in leprosy colony for now, we need to be in society.

My fellows, my friends that are affected or not, we have a lot to do. Because in Ghana, it’s not one year, it’s not two years, it takes time. We go one by one, go door by door, every chance you get, use it to speak. Use yourself as an example, as I have been doing in so many countries. Leprosy is curable, and when you have leprosy, that is not the end of your life. You can also have other chances. We are not people to stay in one place: we are people to come and make change for us . We can also make change for other people. That is my message.

**Conversation was edited for publication**

Q&A with Mathias Duck

Mathias is a person affected by leprosy and is personally and professionally committed to involving persons affected in the fight against leprosy and its stigma. He is from Paraguay and was the Pastor/Chaplain at Hospital Mennonita — a referral hospital for leprosy in Paraguay —from 2010 until 2015. Mathias has worked with children, youth, seniors, men and women with disabilities in different churches and organisations. In October 2010, Mathias was diagnosed with leprosy and completed multi-drug therapy (MDT). In the past few years he has focused more on improving leprosy services by raising the voice and the participation of people affected in decision making and in the delivery of these services. In 2016 he was appointed Chair of ILEP’s Advisory Panel of women and men affected by leprosy

Though he would say that stigma has only occasionally affected him, he views the Declaration of Human Rights as the cornerstone to eliminating stigma from people’s hearts. 

  • Article 21: Everyone has the right to take part in the government of his country, directly or through freely chosen representatives.
  • Article 25: Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family
  • Article 5: No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment.
  • Article 12: No one shall be subjected to arbitrary interference with his privacy, family, home or correspondence, nor to attacks upon his honour and reputation. Everyone has the right to the protection of the law against such interference or attacks.

What does leprosy mean to you?

Well, very personally, I think it is a disease that I experienced in a limited way nine years ago. But it is still shaping my thinking. I feel very fortunate and blessed that I was treated early. I have no impairment and no visible signs of the disease, which most people affected cannot say about themselves.

Why do you think it takes so long to get treated?

I think that’s probably related to ignorance both of people generally and also the medical community. But this ignorance is also related to the stigma. So, stigma, I think, plays a big part. They have the statistics about people who get treatment and that is on average they were treated the third time they went to see a medical professional. It took that long that they actually found the treatment they needed. So, I don’t know if we have enough statistics from different parts of the world, but I’ve heard that on numerous occasions that people do seek medical treatment or try to find out what’s going on with them, but they don’t find the right help at the right time.

Do you think medical professionals understand leprosy?

I think there are a number who do. Usually it’s people who have been in the field for a longer time. They understand the medical part very well and they are also very skilled in the human part. So, they know how to treat leprosy and the reactions and all of the complications related to it. They also know how to address the stigma in a way that upholds the dignity of the person affected. In that way they are also a role model contributing to the reduction of stigma.

Then I think there are people who might have an appropriate level of the medical knowledge, but their fear is big. We still have doctors or medical professionals such as nurses that work in the leprosy field and do not want to touch patients. We hear that every once in a while. I don’t think I’ve seen it personally, but I hear about it.  Or I’ve heard from the leprosy field and also from the HIV field that in some places medical professionals don’t use gloves ever, and when a person affected by leprosy or a person living with HIV comes they put on two sets of gloves. That’s not only the person affected who feels that. The community sees that and they say – oh, this is something very serious because that person is a medical professional, they know what they’re talking about and they just put on two sets of gloves. It must be something horrible, something very dangerous. This is just an example. I think it goes beyond the knowledge and it comes out of the fear that people have.

Why do you think fear overtakes knowledge?

I’ve been thinking a little bit about this, and I think fear is an emotion. Knowledge can help, but in the end fear has to be overtaken on an emotional level. I’m not an expert on this but I think very often it’s love that can probably be the only thing that overcomes fear. We’ve seen that with families. People have asked me why are you not afraid to go as close to people affected? And I asked them, well, what if it was your mom? They said, well, I would definitely not shy away from my mom no matter what she has. It’s hypothetical but in practice, I think we see it a lot. Love, compassion, empathy can overcome fear. But it has to be paired with knowledge to address it in the right way.

What does stigma mean to you?

I think that I’ve had very little personal experience of stigma. It was mostly indirect. What is interesting in my case is that I was already familiarised with the disease. I had all the knowledge before I was diagnosed. I was actually already giving talks on stigma. I’d seen people being abandoned by their families, ostracised by their communities, losing their jobs, etc. and what was interesting was that when I was diagnosed – I used to say that leprosy is a disease like any other disease and that we should just talk about it normally – but when I was diagnosed it took me about three years to talk freely about it. I was afraid how people would react. I knew that in order to for most people to understand what leprosy is, it takes a while and there’s a lot of nuance to it.

Is there an easy way to reach people?

I don’t know if there’s an easy way but there might be easier ways. I think there are some very natural ways of dealing with what these kinds of issues and again, this we’ve seen in other fields.

Where you have issues and injustices and discrimination and stigma, when you have people who are affected themselves, who are also knowledgeable, who have received some training or have some experience, they talk about their own experience and that has been very helpful. Helpful to the public in general. Or people affected pairing up with medical professionals, explaining and bringing together the medical aspect and the human aspect, which can never be separated. Especially not in leprosy because they go hand-in-hand. That would be my best bet.

What are the misconceptions that affected you most?

Again, I don’t know if I was so much affected as I’ve heard others. What I’ve heard a lot is people saying it’s only people who are dirty, who do not have good hygiene, who have this disease.

Or what I heard here, because I belong to a community of immigrants with European background, that they say I did not know that our people, meaning white people, could have this disease. Which is a misconception and stereotype and racist on another level.

I think what affects me the most is when people still use the “L” word. When people refer to people affected as lepers. That tells me how ingrained that still is because people don’t see an issue with that.

There are still people who don’t know that leprosy still exists and then people don’t know that it’s curable. Sometimes the same people believe those two things. I don’t know how they square that up.

There’s quite a few people believing that it is a punishment from God. Just the day before yesterday, at church, a lady asked me if I was completely cured. It was a great opportunity for a good conversation. I mean, you have to be you and have patience but persistence.

Tell me a little bit about the work that you’re doing around leprosy.

Well, one of the things that I do is with the ILEP Advisory Panel. I coordinate the panel. We advise ILEP on issues of policy and strategy, try to bring in the voices of people affected. And we also try to represent other people and try to make sure that that informs the work of ILEP and its Members.

What issues do you see that need to be dealt with?

Stigma is always the biggest one for people affected. People affected really demand action when it comes to stigma and people affected are also saying that it’s a cross-cutting issue. We probably need some efforts on stigma itself. We need the issue of stigma to inform all the other things we do in leprosy also. So, when we do early detection or when we work with disabilities or any of that, then sometimes stigma is more of an issue than we would like to think.

One of the things that I hear a lot from people affected is that there are often opportunities to say their part but not very often are they offered a place at the table to be part of the decision-making. I think that’s crucial – to have people affected be part of the of the entire process on every level. I’m not saying that we don’t need the other professionals, because we do need them. But the people affected bring a very important aspect to it and they contribute to a more comprehensive and more sustainable programme and to empowered communities and individuals and to stigma reduction.

What is the one thing that you feel needs to be done right now?

Well, there are many things that probably need to be done right now. From my perspective and what I know and what I concentrate on it’s what I just told you — the work on stigma and making the participation of people affected a main part. If the participation of people affected is approached in the right way, it will not just benefit the work on stigma, it will also help with the work on disabilities and early detection and treatment and adherence to treatment and all of them.

**Conversation was edited for publication**

Q&A with Alice Cruz

Alice Cruz is the UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members. The Human Rights Council appointed her to lead this mandate on 1 November 2017. Before that Alice worked as External Professor at the Law School of University Andina Simón Bolívar, Ecuador. She has worked with the Brazilian non-profit organisation Movement for the Reintegration of Persons Affected by Hansen disease (MORHAN) and has served as a member of the International Leprosy Association’s Council (2014-2016). Alice has researched and written on the subject of eliminating leprosy and the stigma attached to it since the beginning of her career.

As a Special Rapporteur, Alice’s job is to defend the Universal Declaration of Human Rights. The articles that she speaks to specifically include: 

  • Article 21: Everyone has the right to take part in the government of his country, directly or through freely chosen representatives.
  • Article 25: Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.
  • Article 12: No one shall be subjected to arbitrary interference with his privacy, family, home or correspondence, nor to attacks upon his honour and reputation. Everyone has the right to the protection of the law against such interference or attacks.
  • Article 5: No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment.

Now that you’ve been in the position as Special Rapporteur for a few years are you starting to see trends emerge?

Well, it’s a bit soon to be seeing trends emerge. During the preparation of the 2019 report with the consultation I made and also the conversations I had with different stakeholders, I saw that people started questioning themselves about the importance of giving more attention to gender differences with regard to discrimination. I think this is an ongoing process. I realised when I started preparing the report that even though people talk about gender discrimination, in practice there are not many strategies for addressing the fact that women suffer more discrimination then men. It’s a bit like conversations on human rights. Many times, these words are employed as a token and without real sensitivity, approach and strategy. So, it was good, the conversation that started with the preparation of the report and the interactive dialogue at the Human Rights Council.

I think the reception of the 2019 report at the Human Rights Council was very good and hopefully the message will pass well. I was hoping that the report could be taken seriously, especially by the leprosy community. We need to develop substantive strategies on how to have a human rights approach accepted around leprosy. So that’s what I’m hoping to see.

Do you find that getting the leprosy community to look through a human rights lens has been hard?

We need to go beyond using human rights as a token. In that sense, yes, because it’s very easy to talk about what you don’t know. I feel that the leprosy community is still not prepared to engage with human rights. The two main traditions in the leprosy community have been charity and the medical approach. Human rights really is a different approach. And so I think that sometimes human rights is mistaken with the charity approach. That’s not very helpful, because the human rights approach is really to acknowledge that a person affected by leprosy must be at the centre of any process. What we really need to do is everything possible to ensure that persons affected enjoy citizenship in equal terms with other persons. Human rights is there at the discourse, but, from my point of view, it is not really yet substantiated in the strategies or approaches, the methods of work. I think we still have a long way to go with regard to having a strong and robust human rights approach to leprosy.

What would this approach look like to you?

The most important step would really be to recognise persons affected by leprosy as subjects of rights. In that sense to bring them into the conversation. I still don’t see that. We have as a model – at UN AIDS – in which there are persons affected on the board of UN AIDS and they have a lot of different strategies at different levels to tackle discrimination. That, for instance, would be something quite important for leprosy.

Again, I think that another problem is that we do not know enough about people affected by leprosy, their profile and their needs. They have very basic needs that need to be fulfilled. Some  organisations on the ground are doing that very well, but it’s still not a State policy. Of course, we need to address the problem of transmission and medical care. But, it would be quite important engage other sectors of governance like work, education, social security in the implementation of a human rights approach to leprosy.

Why do you think that reducing stigma and discrimination is important towards stopping transmission and preventing disabilities?

We must stop looking at discrimination and stigma solely as a social determinant of transmission and physical impairments. It is important to acknowledge that stigma and discrimination are major barriers to wellbeing, to health. But reducing stigma and discrimination should be a goal on its own. In order to really have a very robust human rights approach to leprosy, we need to look at zero stigma and discrimination as something that we must achieve even if there is no transmission, even if there is no physical impairments and disability. Understand that true inclusion cannot only be a means to another end, it must be an end in itself.

But going back to the question, of course discrimination is a major barrier in different ways. We need to keep on looking at stigma as something that makes people hide the disease, avoid the medical services – that happens of course. But discrimination is also what makes people have very few resources to sometimes take the public transportation to go to the health facilities. There is an economic dimension to discrimination that  also needs to be taken into consideration. With regards to persons affected by leprosy it really has a very big impact on their access to health and on prevention.

I think we need to address issues of stigmatisation, such as  harmful traditional beliefs and practices that, as you can see in my report, are still very much alive. We need to do something with regard to that, in terms of effective awareness raising. But we also need to look at the social and economic dimensions that keep persons affected by leprosy excluded from mainstream and with very limited access to the services of the state, like health and education. That is also discrimination.

I think another dimension that is also important is that persons affected by leprosy have limited access to justice, and usually access to justice is very important to ensure that people get to enjoy full citizenship.

What small changes are you looking to see before your next report is due?

I think we’re still at the stage of awareness raising, so I cannot expect more than that at this point. I had been working really hard to raise awareness about leprosy within the Human Rights Council. Hopefully the changes I’m making at the Human Rights Council can have some impact on national governments. Also, I hope that the leprosy community itself engages more and more with human rights.

Do you feel that there has been a shift in the Human Rights Council?

Yes, for sure. When I started leprosy was only seen as a health issue that had no place at the Human Rights Council, that should only be addressed by the World Health Organization. There was a strong opposition to the creation of this mandate because of this. Most states thought this mandate was overlapping with others, such as health and disability and that it just didn’t make any sense to waste resources on a mandate that is dedicated to this.

Now that is not the view of the majority. I was very happy with the feedback I received from Member States and I was even more happy to see that states had made a very positive statement about the importance of developing the human rights approach to leprosy. So, yes, at the Human Rights Council I can say that I am seeing a very positive change.

What would you like to see NGOs working within the leprosy world do?

Well, I would like to see them changing their relationships, not only with persons affected by leprosy, but also with existing organisations of persons affected by leprosy. There are not many, but there are some. The important focus I would like to see is a work relationship between ILEP Members and these organisations. I would like to see ILEP Members regarding these organisations as priority partners. I still don’t see that. I would also like, again, that persons affected by leprosy participate in a structural change towards inclusion and wellbeing. From my point of view consultation is important, but consultation for me is not the same as participation.

When you took on this role, what was the big change the one big thing that you really wanted to see happening?

Well, it is important to see change at the legal level of course. It is important to see all those discriminatory laws eliminated. But more than that would be to see countries create affirmative measures. That would be something that I would be very happy to see. They can be temporary, they don’t need to last forever, but it would be important to try to tackle the historical and systemic disadvantage of persons affected with measures that can guarantee equal opportunities, as well as equal outcomes. So, I would like to see the creation of affirmative measures in important countries for leprosy.

But mostly I would like to see some change in the way people look at leprosy. We need to change the narrative around leprosy. We need to see people affected being acknowledged and respected and included like in any other disease. I am very much aware that I will not get to see that happen while I’m in this role.

What do we do about personal prejudice?

One thing that we know that works very well is the participation of persons affected at the community level, and national level, because the only way of changing personal prejudice is to interact with people that are discriminated. When you get to know the people you discriminate against and you see that that person is more similar to you than different, your prejudice starts to fall apart. So, we need to bring persons affected by leprosy into mainstream society and at all levels of society. That is why participation is very important at health services, at the community level, in awareness raising campaigns and decision-making processes at the national level.

What development or progress are you most excited about?

That’s a hard question for me to address this point, because at this point I’m much more focussed on the different barriers to development or progress. How do we overcome those barriers? I would say that the development that I am more excited about is to see the emergence of new leadership of persons affected by leprosy at the global level. I see a new generation coming up that has a very strong sense of their rights and I’m putting all my hopes on them.

**Conversation was edited for publication**

Q&A with Bill Simmons

Bill Simmons joined American Leprosy Missions in 2010 to bring care and a cure to those affected by leprosy. His focus is on those suffering from curable illnesses like leprosy and the societal persecution that often accompanies these types of diseases. Bill is also Vice President of the ILEP Board of Directors, an advisory board member for the Nippon Foundation’s funding of the WHO Global Leprosy Program, a founding and executive member of the Leprosy Research Initiative and the Chair of the Global Partnership for Zero Leprosy. 

As a leader in the leprosy world, Bill’s job sees him guarding people’s right to health and fighting for equal rights and participation for people affected by leprosy.

Tell me about your relationship with leprosy.

Leprosy for me is a gateway to people. When I think about leprosy or Hansen’s disease I don’t focus solely on the disease. I try to think about it from the perspective of people, and people in communities who face a host of challenges. Leprosy, or Hansen’s disease, is one disease among many, but when I think about leprosy I think about what is it in a community, especially in the impact of the disease that is creating a situation where people are neglected and marginalised.

And that’s actually where my heart is. My desire to see change in the world is centred around people who find themselves suffering from marginalisation and stigma caused by a host of high-morbidity, neglected tropical diseases. Hansen’s disease is foremost among that group in my mind, but just to say that I don’t think of leprosy as only Hansen’s disease. I think of leprosy as those things that lead to tragic outcomes for people in communities because of disease, so, when I think of leprosy, I think of people who are neglected.

I also think that it’s at the heart of what we do — we can fight this bacteria all we want but at the end of the day what we do is about people who are marginalised and who are neglected and are robbed of their dignity as human beings. What we do matters to people and I think it’s important to have taken people into account in our work and to know that we did that. That we can attest to that. That’s the thing I would hope that we can all say. Knowing that we honour the people that we were seeking to serve.

You mentioned stigma, which can ruin lives. But we also want to keep focus on transmission and disability around leprosy. Why do you think it is important to attend to all three?

Well if we’re talking about stigma, I think zero stigma is a wonderful notional aspiration. It is also probably unlikely to ever be truly attained while human beings are still alive. The stigma resides in people’s hearts and is not easy to overcome, but there are things that create stigma that can be overcome that I think we can a hundred percent achieve. I’m talking about achieving a hundred percent equal rights, a hundred percent participation. These are the types of things that are critical for people to have control of their own outcomes, in their lives.

In the United States, I liken this to the Civil Rights Movement. The progress toward equal rights in this country was a long one and yet today we live in a culture where in the US people have equal rights, and they have access to 100% participation, but it hasn’t gotten rid of or eliminated a hundred percent of the stigma or the bias or the racism in people’s hearts. That’s a much longer battle to be fought and one that’s definitely worth fighting.

I think the same thing is true in leprosy, but the place we have to pass through initially, before we can ever dream of eroding stigma over time, is to start with ensuring that people everywhere, who have had Hansen’s disease, have equal rights and equal opportunity for participation in their communities and in their political and governing systems. That is critical. It is one of the first aspects of equality of human rights, and that’s where my hope lies initially. It would be a huge step in eroding stigma around the world, accomplishing those two things.

What about zero transmission and zero disability?

Transmission and disability are obviously two entangled aspects of Hansen’s disease. If we didn’t have new cases, new instances of the disease, the math would say there would be no new disability in leprosy. The question is, can we stop transmission of the disease all together? The answer to that is yes. Yes, we can do that, and it has been done in places around the world already. There are many countries in the world that have no leprosy today because there’s no longer any transmission of the disease, so we know that it is possible to reach zero transmission in countries and that’s been done without the vaccine and without chemoprophylaxis.

Most of the western world today no longer has any transmission of leprosy and that was accomplished without new tools for ending transmission. We know that we can get to zero even without new tools. But we also know that, in places that are highly endemic, to make a radical change, a tool is the best way to change the inevitability of transmission.

I think about the fact that it’s inevitable that at some point leprosy will disappear. But there will be far too many lives impacted and far too many people who will live their entire lives with stigma and disability for us to wait for what’s inevitable.

You talk about hope really clearly. What hopeful trends do you see emerging?

Well, the trends in the technology space are changing so quickly that I think it’s difficult to fully understand what the next 10 or 20 years are going to be like. But it is a hopeful space, because I think that the changes in technology and the rapid application across multiple sectors is going to enable those solutions to reach people who need them the most, in the most cost-effective way. Much more quickly than could have been imagined in the past. One aspect that I think is driving these changes for tools down to people in need is actually the combination of market-based solutions with solutions that reach the underserved and low-impact markets.

I think there are trends, things that are happening around this idea of translational research, which is not a new one. But I think that it’s becoming more central to the way leprosy research is done — exploring the idea of how can we track the time from the lab to the person. On the ground, I think one of the things that’s happening is how people have started to take control of their own situation. And we see, for example in northern India, we see that women are on the front edge of leading change in their community. This gets at the heart of a lot of issues people care about – the rights of women combined with the rights of people with disease. I think we see a change, in that service delivery and programmes that help people will increasingly be programmes that are implemented by women.

What are you looking at that excites you, that makes you get up in the morning?

The same thing that’s been true for the past 10 years, that there are real people that are impacted by the work that we do. Not necessarily that they are impacted directly today, but I know that what we do every day does reach people around the world in some way. That makes it worth getting up every morning, to be a part of that. I do think that we have the opportunity today to be on the edge of radically reducing the incidence of leprosy in our lifetime. I do think that we are on the front end of being able to see the active number of new cases each year being reduced from where it has been to less than 25,000 in the next 20 to 30 years. I think that can happen.

What I am excited about in the sphere of partnerships is that none of that progress will be accomplished without partnerships. When you’re talking about a rare disease like leprosy in the scheme of things, it’s a difficult task to think that we’re going to find a way to get in front of the incidence of leprosy. The opportunity for any partnership, is to find new ways to work differently so that you can speed up the outcomes. To me, that’s the same concept of how do we speed up the inevitable? And I think that’s what partnership and collaboration are about.

Is there one thing that you think is really important that you feel other people are not paying enough attention to?

I think there’s two things. One is I think that with Alice Cruz, the UN Special Rapporteur, the human rights-based focus in leprosy is an angle of attack. I think it is a new way to think about aligning people at a global level around the rights of people affected and the ongoing issues of how people affected by leprosy are treated.

I think that’s important because we’ve talked about stigma and the rights of people affected in many ways for years in this community. But there’s something different about how we’re talking about it from a human rights-based approach and not a medical disease sort of approach. I think that is worth continuing to explore and add fuel to that fire.

I think that if we can continue to galvanise people affected around rights, that continues to infuse them with financial and other support, to facilitate their voice becoming more and more cohesive. I think that’s a great way to move something forward in a new way. Maybe accelerating it in a new way. I certainly think that Alice and her role at the UN helped to raise that point.

The other thing I think people need to be aware of is that in the Neglected Tropical Disease space, for years mass drug administration campaigns have been driving most of the funding and activity around the world. What many people are not aware of is that most of those mass drug administration campaigns have reached or are near to reaching their targets and when that happens both the work of all the organisations that have been engaged and doing that drug administration, as well as the governments funding it, won’t have anything to fund anymore. What happens then? It’s an interesting question around what government funding goes into when there’s no longer an easy solution. I don’t know the answer, but I know that it’s an area that I think is worth paying attention to because in the next two to four years, it’s going to be a radical change in the landscape globally.

**Conversation edited for publication**

If you see the L-word being used

If you come across the use of the word ‘leper’ or other negative language in media articles or social media posts, you may want to respond respectfully by suggesting alternative language.

If you see the ‘L’ word in a media story, you might wish to use or adapt this style of response:

Thank you for article X. We respectfully request that you change the word “leper” to “people affected by leprosy”, as this is the accepted term used currently that promotes the dignity and human rights of people who have experienced this disease. The former term is considered derogatory, and using it perpetuates the stigma and discrimination many people affected by leprosy experience.

In some instances, you may want to share content that contains language or images that do not adhere to the ILEP policy but has other value. A suggested longer disclaimer, for social media, websites, etc:

Please note that while we are sharing this relevant/important/interesting article, ILEP and its Members object to the use of the word ‘leper’ because it is derogatory and dehumanising to women, men and children affected by leprosy, and their families. We instead endorse the use of language and imagery that respects and promotes the dignity of all persons affected by leprosy. We routinely reach out to journalists and media outlets about the importance of using appropriate language and the positive role they can play in helping end stigma and discrimination. See our ILEP policy on language, photography and imagery for more information.

A shorter disclaimer on Twitter might read:

While we object to the use of the L word, which is derogatory towards people affected by leprosy, this is otherwise an important article to share.

Good Practice

Good practice / DescriptionCountryTopic/Keyword

The National Leprosy and Tuberculosis Control programme, a unit of the Federal Ministry of Health, used the UN Principles and Guidelines as one of its background documents in drafting its current strategic plan thus ensuring that adequate safeguards are provided for persons affected by leprosy and their family members against discrimination.

NigeriaAnti-discrimination in future legislation

The National Commission for Human Rights participated in the review of laws tabled in the Parliament to ensure that no law is passed that violates the human rights of citizens, including persons affected by leprosy and their family members.

RwandaAnti-discrimination in future legislation

People affected by leprosy join associations to defend their rights as people with disabilities and get involved in inclusion processes.

ColombiaAssociations of affected by leprosy

The National Action plan developed by the Ministry of Health for the years 2014 – 2016 has activities targeting the awareness raising on issues of discrimination as well as workshops on stigma for community members and health workers.

Sri LankaAwareness

Several services are provided by various Ministries, such as annual conferences, symposia, annual awareness raising activities, counselling services and investigations of suspected human rights violations.

JapanAwareness, counselling, prevention

People affected by leprosy are empowered by DAHW to start their social inclusion process and eliminate stigmatisation.

ColombiaCBR implementation

Leprosy Compensation Law: Law to compensate interned persons in the leprosia, 2001.

JapanCompensation (2001)

Law 11.520 provides financial support and compensation for persons affected by leprosy in leprosy colonies (2007). This includes lifetime public pension and access to quality leprosy services at all levels.

BrazilCompensation (2007)

Economic support for those affected by leprosy with disabilities is increased to a legal minimum wage.

ColombiaEconomic support Law 380 of 1997

State laws (Constitution laws) Act 12, states that all people are equal no matter someone’s condition.

TanzaniaEquality

The Annual Report of the Government’s Anti Leprosy Campaign for 2014 mentions – ‘To fight all forms of stigma associated with Leprosy’ as one of their specific objectives.

Sri LankaFighting stigma as objective

The vision of the ‘National leprosy strategic plan 2015-2020’ is ‘No disability, no discrimination, self-reliance’. One of the strategies is to promote the public awareness about leprosy, and stigma and discrimination against persons affected by leprosy and their family members.

ThailandFighting stigma as objective

Financial assistance is provided for people affected by leprosy who do not own any assets.

ColombiaFinancial assistance Law 14 of 1964.

Persons with Disability Act No 9 / 2010, make provisions for the health care, social support, accessibility, rehabilitation, education and vocational training, communication, employment or work protection and promotion of basic rights for the persons with disabilities and to provide for related matters

TanzaniaInclusion of persons with disabilities.

National Strategy on Inclusive Education. 2009 – 2017 reinforced and consolidated so as to provide access to quality education to all children with an emphasis on children with disabilities.

TanzaniaInclusive Education

In 2011, the national leprosy control programme decided to include people affected by leprosy in Inclusive Self Care Groups for prevention and care of disabilities.

MozambiqueInclusive Self Care Groups (2011)

Government passed a law “Decreto do Deficiente Fisico” and is passing a law for protection of people with disability and stopping stigma and discrimination.

AngolaLaw for protection of people with disabilities

The government has issued guidelines on implementation of National Leprosy Control Program to ensure persons affected by leprosy enjoy equal rights with others regarding e.g. the right to work and education, establishing a family and public transport. However, it is reported that government officers and organizations do not practise the policies and legal document in reality.

VietnamLegal documents promoting inclusion

The Act includes a provision of free legal aid to persons with disabilities, so any leprosy cured person who fits within the mandate of the disability law would fall within this positive provision

IndiaLegal Services Act, 1987

Partners in Nepal succesfully lobbied against the discriminatory “Anti-Marriage Law” that would have allowed the spouse of a person affected by leprosy to claim for a divorce (on basis of leprosy).

NepalLobby against discriminatory law

National disability mainstreaming strategy 2010-2015 (NDMS), Oct 2010

TanzaniaMainstreaming disability issues (including persons with leprosy related disabilities) in existing structure

Patient associations organise the National Federation of People Affected by Leprosy seeking representation at the national level.

ColombiaPeople affected by leprosy have national representation

Law of the Child Act no 21/2009 promotes protect and maintain the welfare of a child (including children with disabilities) with a view to giving effect to international and regional conventions on the rights of the child; to provide for affiliation, foster care, adoption and custody of the child; to further regulate employment and apprenticeship; to make provisions with respect to a child in conflict with law and to provide for related matters.

TanzaniaPromotes protection of all children, including those with disabilities

Eliminate racism and all forms of discrimination and consolidate public policies for the protection and prevention of racism and all forms of discrimination. Includes those affected by leprosy and other diseases.

BoliviaPublic policies to protect all discrimination forms. Law 045 of 2010

A Law Commission report in 2015 proposed composite legislation entitled “Eliminating Discrimination Against Persons Affected by Leprosy” (EDPAL) to eliminate discriminatory laws and implement anti-stigma provisions. Although some laws were repealed or amended, more than 100 remain on the statute books. The report is under review by the government.

IndiaRepeal of anti-discriminatory laws. Please note: this has been proposed but not yet active

Re-enactment of legislation, in line with Bangladesh’s CRPD obligations, to ensure establishment and protection of the rights of persons with disabilities. It also provides for the establishment of national and local committees to formulate and implement policies and guidelines to ensure the rights, dignity and welfare of persons with disabilities. In addition to general prohibition of discrimination there are specific provisions about access to identity cards, public transport, education and public services.

BangladeshRights and Protection of Persons with Disabilities Act, 2013

New law ‘Nº 01/2007 DU 20/01/2007’ to provide social protection to all disabled people (including leprosy-affected).

RwandaSocial protection

National strategy for Growth and Poverty reduction (II (2010) – advocates for interventions to prevent unacceptable levels of socioeconomic insecurity and deprivation, underscoring the fact that the developmental role that social protection can play is to grapple with poverty traps, reduce household insecurity and encourage investments in poverty -reducing assets (physical, human, social and financial).

TanzaniaSocial Protection for persons with disabilities

Introduced by a Member of Parliament in the Rajya Sabha (Upper House) in 2017. It is now to be listed for discussion for consideration to be made into a law in the Parliament. It is on the lines of the EDPAL report (No. 256) looking into the discriminatory provisions in various laws and the affirmative actions needed for people affected by leprosy for their integration, inclusion and participation.

IndiaThe Rights Of Persons Affected By Leprosy and Members Of Their Family (Protection Against Discrimination And Guarantee Of Social Welfare) Bill, 2017

Legislation in line with India’s CRPD obligations to ensure that persons with disabilities enjoy the right to equality, life with dignity and respect for his or her integrity equally with others. Classifications include ‘leprosy cured’, persons who have completed leprosy treatment but have loss of sensation or physical disability resulting from leprosy.

IndiaThe Rights of Persons with Disibalities Act, 2016

MORHAN, an organisation of persons affected by Hansen’s Disease (leprosy), often has a seat at the National Health Council and also participates actively in the national/state/municipal health conferences.

BrazilViews taken into account in decision making

The Act on the Promotion of Resolution of Hansen’s Disease Issues 2009, provides that governments shall take all necessary measures to reflect the opinions of persons affected by leprosy and other relevant persons in the formulation and implementation of measures concerning people affected by leprosy. This covers women, children, older persons and other vulnerable groups.

JapanViews taken into account in decision making

Discriminatory laws and regulations

LawCountryTopic/KeywordDescription
Alagappa University Act, 19851IndiaSegregation/separation

Suffering from leprosy is a ground for disqualification from nomination or membership of any authority of the University. Active law, under challenge in the PIL in the SC of India

Alien Occupation Act, B.E. 2551 (2008)ThailandEmployment

Excludes people diagnosed with leprosy from obtaining work permits. If an applicant is diagnosed with leprosy with no severe active/complications, a work permit will be granted along with treatment. If severe active/complications are found, work permit is denied and treatment is provided before deportation.

Allahabad High Court Rules, 1952IndiaEmployment

A person suffering from leprosy is disqualified from enrolment as a pleader or mukhtar. Active rule, under challenge in the PIL at the SC of India

Andhra Pradesh Charitable and Hindu Religious Institution and Endowments Act, 1987IndiaSegregation/separation

Disqualification from membership or continuation on the Trust for persons suffering from leprosy. Active law, under challenge in the PIL at the SC of India

Andhra Pradesh Co-Operative Societies Act, 1964IndiaEmployment

Disqualified from being or continuing as a member of the committee if suffering from leprosy. Active law, under challenge in the PIL in SC of India

Andhra Pradesh Excise (Grant of Licence of Selling by In-House and Conditions of Licence) Rules, 2005IndiaEmployment

Bar on persons suffering from leprosy to acquire a license if they are to personally handle the stocks. Active rule, under challenge in the PIL at the SC of India

Andhra Pradesh Excise (Lease of Right to Sell Liquor in Retail) Rules, 1969IndiaEmployment

Prohibition on persons suffering from leprosy to enter auction houses leading to segregation and disqualification from getting a lease to a person suffering from leprosy especially where the person is directly handling liquor. Active rule, under challenge in the PIL at the SC of India

Andhra Pradesh Excise Act, 1968IndiaEmployment

Prohibition on employment of persons suffering from leprosy with the prescription of a punishment for contravention. Active act, under challenge in the PIL at the SC of India

Andhra Pradesh Habitual Offenders Rules, 1965IndiaSegregation/separation

Provides for sending a prisoners suffering from leprosy to a leprosy asylum. Active rule, under challenge in the PIL at the SC of India

Andhra Pradesh Indian Liquor & Foreign Liquor Rules, 1970IndiaEmployment

Bar on persons suffering from leprosy to acquire a license if they are to personally handle the stocks and for employment in this business. Active rule, under challenge in the PIL at the SC of India

Andhra Pradesh Medical Practitioners Registration Act, 1968IndiaEmployment

Disqualification from being a member of the council if affected by leprosy. Active law, under challenge in the PIL at the SC of India

Andhra Pradesh Municipalities Act, 1965IndiaSegregation/separation

Not eligible to stand for election or continue on a post in the municipality if suffering from leprosy and also to expel persons affected from market places leading to segregation and denial of political participation. Active law, under challenge in the PIL at the SC of India

Andhra Pradesh Prevention of Begging Act, 1977IndiaSegregation/separation

Removal of people affected by leprosy from beggary homes to leprosy asylums. Active law, under challenge in the PIL at the SC of India

Andhra Pradesh Public Libraries Act, 1969IndiaEmployment

Disqualified from being a member of the Zilla Grandhalaya Samstha if suffering from leprosy. Active law, under challenge in the PIL at the SC of India

Andhra Pradesh Universities Act, 1991IndiaSegregation/separation

Suffering from leprosy is a ground for disqualification from nomination or membership of any authority of the University and also removal from a position of authority. Active law, under challenge in the PIL in the SC of India

Assam Prevention of Begging Act, 1964IndiaSegregation/separation

Removal of people affected by leprosy from beggary homes to leprosy asylums. Active law, under challenge in the PIL at the SC of India

Banaras Hindu University Act, 1915IndiaSegregation/separation

Suffering from contagious leprosy is a ground for disqualification from nomination or membership of any authority of the University and also removal from a position of authority for non-teaching staff. Active law, under challenge in the PIL in the SC of India

Bangalore Metro Railway (Carriage and Ticket) Rules, 2011IndiaPublic transportation

Restriction on travel of persons with leprosy. Active rule, under challenge in the PIL at the SC of India

Bengal Vagrancy Act, 1943IndiaSegregation/separation

Separation of people affected by leprosy from other vagrants in the home. Active law, under challenge in the PIL at the SC of India

Bharathiar University Act, 1981IndiaSegregation/separation

Suffering from leprosy is a ground for disqualification from nomination or membership of any authority of the University. Active law, under challenge in the PIL in the SC of India

Bharathidasan University Act, 1981IndiaSegregation/separation

Suffering from leprosy is a ground for disqualification from nomination or membership of any authority of the University and also removal from a position of authority. Active law, under challenge in the PIL in the SC of India

Bihar Document Writers Licensing Rules, 1968IndiaEmployment

Disqualification from grant of license if affected by leprosy. Active rule, under challenge in the PIL at the SC of India

Bihar Prevention Of Beggary Act, 1951IndiaSegregation/separation

Maybe segregated on the grounds infectious and contagious diseases, which ordinarily includes leprosy. Active law, under challenge in the PIL in the SC of India

Bye-Laws of Pradeshik Co- Operative Dairy Federation Limited, 1979IndiaEmployment

Disqualification for being or continuing as a member of the Board of Directors if suffering from leprosy. Active bye-law, under challenge in the PIL in the SC of India

Cabinet decision no. 28 of 2010United Arab EmiratesImmigration related laws

People affected by leprosy are not allowed to enter the country and any person diagnosed with leprosy is deported.

Chennai Metro Railway (Carriage and Ticket) Rules, 2014IndiaPublic transportation

Restriction on travel of persons with leprosy. Active rule, under challenge in the PIL at the SC of India

Chhattisgarh Municipalities Act, 1961IndiaVoting related

Not eligible to stand for election if suffering from an infectious form of leprosy leading to segregation and denial of political participation. Active law, under challenge in the PIL at the SC of India

CitizenshipUSAImmigration related laws

People affected by leprosy are inadmissible

City of Rangoon Municipal Act, 1922MyanmarSegregation/separation

Municipal Corporation is allowed to establish segregated ‘asylums’ for persons affected by leprosy to whom ‘pauper lepers’ can be sent.

Coimbatore City Municipal Corporation Act, 1981IndiaSegregation/separation

Duty to expel persons suffering from leprosy from market areas leading to segregation. Active law, under challenge in the PIL at the SC of India

Commercial Bathhouses Regulation (Cap. 132I)Hong KongSegregation/separation

Persons affected by communicable diseases, including leprosy, are denied access to commercial bathhouses.

Delhi Land Reforms Act, 1954IndiaVoting related

Not eligible to stand for election or continue in office if suffering from leprosy leading to segregation and denial of political participation. Active law, under challenge in the PIL at the SC of India

Delhi Municipal Corporation Act, 1957IndiaSegregation/separation

Duty to expel persons suffering from leprosy from market areas leading to segregation. Active law, under challenge in the PIL at the SC of India

Delhi Panchayat Raj Act, 1954IndiaVoting related

Not eligible to stand for election or continue in office if suffering from leprosy leading to segregation and denial of political participation. Active law, under challenge in the PIL at the SC of India

Delhi Petty Offences (Trial by Special Metropolitan Magistrates) Rules, 1998IndiaEmployment

A person suffering from leprosy is disqualified from continuing in the post. Active rule, under challenge in the PIL at the SC of India

Delhi Prisons (Treatment of Convicts Sentenced to Simple Imprisonment, Death, Female Prisoners, Youthful Prisoners, Leper Prisoners and Lunatic Prisoners) Rules, 1988IndiaSegregation/separation

Provides for the segregation and separation of prisoners affected by leprosy and destruction of clothing and bedding used by such prisoner. Active rule, under challenge in the PIL at the SC of India

Dissolution of Muslim Marriage Act, 1939PakistanMarriage/Divorce

Women are entitled to divorce their husbands if “he has been insane for a period of two years or is suffering from leprosy or a virulent venereal disease”

Dr B.R Ambedkar Open University Act, 1982IndiaSegregation/separation

Suffering from leprosy is a ground for disqualification from nomination or membership of any authority of the University. Active law, under challenge in the PIL in the SC of India

Dravidian University Act, 1997IndiaSegregation/separation

Suffering from leprosy is a ground for disqualification from nomination or membership of any authority of the University. Active law, under challenge in the PIL in the SC of India

Employment Service Act (Article 48)TaiwanImmigration related laws

Based on the Regulations Governing Management of the Health Examination of Employed Aliens, No visa, employment permit or extension of employment permit shall be issued to any individual failing in any one item of the health examination.

Environmental Health Services Regulations, 2003DominicaSegregation/separation

Compulsory segregation of people affected by leprosy (lists leprosy as a First Schedule disease).

Family Courts (Patna High Court) Rules, 2000]IndiaMarriage/Divorce

Virulent and incurable form of leprosy is a ground for divorce. Active rule, under challenge in the PIL at the SC of India

Federal Law Number 28 of 2005 (Article 112)United Arab EmiratesMarriage/Divorce

If one of the parties has leprosy, obstruction of genital canals, or insanity before or during the marriage, the spouse could ask for the marriage’s rescission.

GCA 10GuamSegregation/separation

Sections 3309-3321; 3328; and 3333 allow for several forms of discrimination on the basis of leprosy. These include requirement to isolate; police enforcement of isolation; destruction of property; closure of schools; specific disposal of corpses; restrictions to enter country.

 

 

Goa University Act, 1984IndiaSegregation/separation

Suffering from contagious leprosy is a ground for disqualification from nomination or membership of any authority of the University and also removal from a position of authority for non-teaching staff and academic staff. Active law, under challenge in the PIL in the SC of India

Goa, Daman and Diu Prevention of Begging Act, 1972IndiaSegregation/separation

Removal of people affected by leprosy from beggary homes to leprosy asylums. Active law, under challenge in the PIL at the SC of India

Greater Hyderabad Municipal Corporation Act, 1955IndiaVoting related

People affected by leprosy are not eligible to stand for election. Active law, under challenge in the PIL at the SC of India

Haryana Prevention of Beggary Act, 1971IndiaSegregation/separation

Removal of people affected by leprosy from beggary homes to leprosy asylums. Active law, under challenge in the PIL at the SC of India

Haryana Shri Mata Mansa Devi Shrine Act, 1991IndiaSegregation/separation

Disqualification from membership on the Board for persons suffering with contagious leprosy. Active law, under challenge in the PIL at the SC of India

Hindu Marriage (High Court of Meghalaya) Rules 2013IndiaMarriage/Divorce

Virulent and incurable form of leprosy is a ground for divorce. Active rule, under challenge in the PIL at the SC of India

Hindu Religious Institutions and Charitable Endowments Act, 1997IndiaSegregation/separation

Disqualification from membership and removal from continuation on the Board for persons suffering from leprosy. Active law, under challenge in the PIL at the SC of India

Immigrant visaPhilippinesImmigration related laws

Leprosy is classified as Class A disease (Dangerous or contagious), people affected by leprosy are denied immigration visa – Law under review

Immigration Act, B.E. 2522 (1979)ThailandImmigration related laws

Excludes people diagnosed with leprosy from entering and taking up residency in the Kingdom

Immigration Control Act 7 of 1993NamibiaImmigration related laws

People affected by leprosy are not allowed to enter the country.

Infectious Disease Act, 1977SingaporeSegregation/separation

People affected by leprosy may be detained and isolated in hospitals or other places

Inland Steam Vessels (Madhya Pradesh) Rules, 1962IndiaPublic transportation

Restriction and separation of person suffering from leprosy aboard vessels. Active rule, under challenge in the PIL at the SC of India

Internal Security ActSingaporeSegregation/separation

If a detained person appears to the officer-in-charge to be a leper, the officer-in-charge may, by order in writing, direct his removal to any Government hospital, there to be kept and treated until cured of his leprosy.

Jammu and Kashmir Dissolution of Muslim Marriages Act, 1999IndiaMarriage/Divorce

Suffering from leprosy is a ground for divorce. Active law, under challenge in the PIL at the SC of India

Jammu and Kashmir Hindu Adoptions and Maintenance Act, 1960IndiaMarriage/Divorce

The wife shall have the right to live separately from her husband if he is suffering from a virulent form of leprosy. Active law, under challenge in the PIL at the SC of India

Jammu and Kashmir Hindu Marriage Act, 1980IndiaMarriage/Divorce

Virulent and incurable form of leprosy is a ground for divorce. Active law, under challenge in the PIL at the SC of India

Jammu and Kashmir Motor Vehicles Act, 1998IndiaSegregation/separation

People affected by leprosy are not eligible to obtain a driving license or drive a public service vehicle

Jammu and Kashmir Shri Amarnath Ji Shrine Act, 2000IndiaSegregation/separation

Disqualification from membership on the Board for persons suffering with contagious leprosy. Active law, under challenge in the PIL at the SC of India

Jammu and Kashmir Shri Mata Vaishno Devi Shrine Act, 1988IndiaSegregation/separation

Disqualification from membership on the Board for persons suffering with contagious leprosy. Active law, under challenge in the PIL at the SC of India

Jawaharlal Nehru University Act, 1966IndiaSegregation/separation

Suffering from contagious leprosy is a ground for disqualification from nomination or membership of any authority of the University and also removal from a position of authority for non-teaching staff and academic staff. Active law, under challenge in the PIL in the SC of India

Karnataka Municipalities (Regulation and Inspection of Lodging and Boarding Houses) (Model) Bye-Laws, 1966IndiaSegregation/separation

No person affected by leprosy to be allowed inside, to occupy, handle or work in the designated areas under the Act. Active law, under challenge in the PIL at the SC of India

Karnataka Municipalities Act, 1964IndiaSegregation/separation

Duty to expel persons suffering from leprosy from market areas leading to segregation. Active law, under challenge in the PIL at the SC of India

Karnataka Rajya Dr Gangubai Hangal Sangeetha Mattu Pradarshaka Kalegala Vishwavidyalaya Act, 2009IndiaSegregation/separation

Removal of persons affected from membership of the university. Active law, under challenge in a Public Interest Litigation (PIL) being heard in the Supreme Court (SC) of India on discriminatory laws against persons affected by leprosy.

Karnataka Samskrita Vishwavidyalaya Act, 2009IndiaSegregation/separation

Removal of persons affected from membership of the university. Active law, under challenge in the PIL in the SC of India

Kerala Document Writers’ Licence Rules, 1960IndiaEmployment

A leper to be disqualified from getting a license leading to loss of employment opportunity. Active rule, under challenge in the PIL in the SC of India

Kerala Fishermen Welfare Societies (Determination of Strength of Committees and Conduct of Election) Rules, 1980IndiaEmployment

Disqualification from being a member of the committee if affected by leprosy. Active rule, under challenge in the PIL at the SC of India

Kerala Habitual Offenders Rules, 1963IndiaSegregation/separation

Provides for a registered offender to be sent to a leprosy asylum on his/her choice with restriction of movement out of there. Active rule, under challenge in the PIL at the SC of India

Kerala Kahadi and Village Industries Board Act, 1957IndiaEmployment

Disqualified from being or continuing as a member of the Board if suffering from leprosy. Active Act, under challenge in the PIL in SC of India

Kerala Places of Public Resort Rules, 1965IndiaSegregation/separation

Restriction on allowance of people affected by leprosy in public resorts and for mandatory reporting to health officer. Active rule, under challenge in the PIL at the SC of India

Law no. 76-03SenegalSegregation/separation

In 1976, Law 65 -128 about leprosy villages replaced law 76-03 which re-designated leprosy villages across Senegal to “villages of social rehabilitation”. However, they are still stigmatised and not well integrated into local communities and villages.

Leper Enactment Act 1926MalaysiaSegregation/separation

Compulsory notification and isolation of leprosy patients

Lepers Act 1937DominicaSegregation/separation

Compulsory segregation of people affected by leprosy

Leprosy Suppression Ordinance, 1923Papua New GuineaSegregation/separation

Forced segregation and isolation of leprosy patients

Loi 98-036MaliSegregation/separation

High Commissioner of the region or the District of Bamako has the right to order the hospitalisation of people diagnosed with leprosy.

Madhya Bharat Shri Mahakaleshwar Temple Act, 1953IndiaSegregation/separation

Disqualification from membership on the Board for persons suffering with contagious leprosy and removal of any panda (pandit working at the temple) if suffering from leprosy. Active law, under challenge in the PIL at the SC of India

Madhya Pradesh Bhiksha Vrittinivaran Adhiniyam, 1973IndiaSegregation/separation

Removal of people affected by leprosy from beggary homes to leprosy asylums. Active law, under challenge in the PIL at the SC of India

Madhya Pradesh Gram Panchayat (Regulation of Slaughter House) Rules, 1998IndiaSegregation/separation

Restrictions on persons suffering from leprosy to enter slaughter house premises. Active rule, under challenge in the PIL at the SC of India

Madras Panchayats Act,1958IndiaVoting related

Not eligible to stand for election or continue in office if suffering from leprosy leading to segregation and denial of political participation. Active law, under challenge in the PIL at the SC of India

Madras University Act, 1923IndiaSegregation/separation

Suffering from contagious leprosy is a ground for disqualification from nomination or membership of any authority of the University and also removal from a position of authority. Active law, under challenge in the PIL in the SC of India

Madurai- Kamaraj University Act, 1965IndiaSegregation/separation

Suffering from leprosy is a ground for disqualification from nomination or membership of any authority of the University. Active law, under challenge in the PIL in the SC of India

Maharashtra Prevention of Begging Act, 1959IndiaSegregation/separation

Removal of people affected by leprosy from beggary homes to leprosy asylums. Active law, under challenge in the PIL at the SC of India

Meat Industries Act 1996 (NT) s 42; Meat Industries Regulations 1997 (NT) r 64, sch 3AustraliaSegregation/separation

Persons who have reason to believe they are infected with or affected by leprosy must not enter or remain at an establishment from which meat for human consumption is dispatched; a holder of a licence permitting the dispatch of meat for human consumption who has reason to believe a person is infected with or affected by leprosy, must not permit that person to enter or remain at an establishment operated under that licence.

Metro Railways (Carriage and Ticket) Rules, 2014IndiaPublic transportation

Restriction on travel of persons with leprosy. Active rule, under challenge in the PIL at the SC of India

Midwives Registration Ordinance (Cap. 162)Hong KongEmployment

The regulatory authority of midwives having the discretion to prohibit registered midwives suffering from any such scheduled infectious disease from attending women in childbirth.

Migration Act 1958 (Cth)AustraliaImmigration related laws

Requirement of persons with leprosy to provide a health undertaking in order to obtain visa; undertaking requirements include reporting to the health clinic to which they are referred, placing themselves under the health clinic’s professional supervision, and undergoing any required course of treatment or investigation.

Mother Teresa Women’s University Act, 1984IndiaSegregation/separation

Suffering from leprosy is a ground for disqualification from nomination or membership of any authority of the University. Active law, under challenge in the PIL in the SC of India

Nagarjuna University Act, 1976IndiaSegregation/separation

Suffering from contagious leprosy is a ground for disqualification from nomination or membership of any authority of the University and also removal from a position of authority for non-teaching staff and academic staff. Active law, under challenge in the PIL in the SC of India

Nathdwara Temple Act, 1959IndiaSegregation/separation

Disqualification from membership on the Board for persons suffering from leprosy. Active law, under challenge in the PIL at the SC of India

Nepal’s Civil Code (Mulki Ain) 2074 B.S.NepalMarriage/Divorce

According to Part 3, Family Law, Article 1, Marriage Law, Code 71, 2 (c), it is against the law to marry (by deceit) or assist to marry off (by deceit) people with hearing/speaking disability, blind and leprosy affected. Law under review

Non-immigrant or immigrant visaUSAImmigration related laws

People affected by leprosy are not eligible for visas

North-Eastern Hill University Act, 1973IndiaSegregation/separation

Suffering from contagious leprosy is a ground for disqualification from nomination or membership of any authority of the University and also removal from a position of authority for non-teaching staff and academic staff. Active law, under challenge in the PIL in the SC of India

Notifiable diseaseUSAImmigration related laws
Nurses (Registration and Disciplinary Procedure) Regulations (Cap. 164A)Hong KongEmployment

Medical certificate required for a nurse to certify that she is not suffering from any such disease (as part of her application to register)

Nurses and Midwives Act, 1953IndiaEmployment

Disqualification for being or continuing as a member of the council if affected by leprosy. Active law, under challenge in the PIL at the SC of India

On the Education of the Leper, 1960NigerSegregation/separation

“If the search for the Hansen bacillus is positive, the child will be temporarily evicted from the school for a period of one year”

Orissa (Licensing of) Deed Writers’ Rules, 1979IndiaEmployment

Disqualification from grant of license to a person suffering from leprosy. Active law, under challenge in the PIL in SC of India

Orissa Municipal Act, 1950IndiaSegregation/separation

Leprosy patients are not eligible to stand for election or continue in a post in the municipality and can also be expelled from market places. Active law, under challenge in the PIL at the SC of India

Orissa Municipal Corporation Act, 2003IndiaVoting related

Not eligible to stand in elections of a corporator if affected by leprosy at the time of nomination leading to segregation and denial of political participation. Active law, under challenge in the PIL in the SC of India

Orissa Professional Typists for Civil and Criminal Courts (Registration) Rules, 1981IndiaEmployment

Not eligible to register or continue as a typist if a leprosy patient. Active law, under challenge in the PIL in SC of India

Osmania University Act, 1959IndiaSegregation/separation

Suffering from leprosy is a ground for disqualification from nomination or membership of any authority of the University and also removal from a position of authority. Active law, under challenge in the PIL in the SC of India

Pakistan Fish Inspection and Quality Control Act, 1997PakistanEmployment

No Person who is suffering from leprosy, tuberculosis, polio or such other contagious diseases, shall handle, carry or process fish or work in a fish processing and packing plant or establishment

Pondicherry Excise Rules, 1970IndiaEmployment

Discontinuation of the licence if the person is suffering from leprosy and restriction on employing person suffering from leprosy. Active rule, under challenge in the PIL at the SC of India

Pondicherry University Act, 1985IndiaSegregation/separation

Suffering from leprosy is a ground for disqualification from nomination or membership of any authority of the University and also removal from a position of authority for non-teaching staff and academic staff. Active law, under challenge in the PIL in the SC of India

Potti Sreeramulu Telugu University Act, 1985IndiaSegregation/separation

Suffering from leprosy is a ground for disqualification from nomination or membership of any authority of the University. Active law, under challenge in the PIL in the SC of India

Prevention and Control of Disease Ordinance (Cap. 599)ChinaSegregation/separation

Leprosy is expressly defined as a “Scheduled Infectious Disease” in HK’s main public health legislation. This definition includes diseases such as COVID-19, Anthrax, Chickenpox and Cholera.

Prisons Act, 1933SingaporeSegregation/separation

Where a prisoner appears to be suffering from leprosy, the Minister may, by order in writing, direct his removal to any hospital or place specified by the Director of Medical Services.

Puducherry Municipalities Act, 1973IndiaSegregation/separation

Duty to expel persons suffering from leprosy from market areas leading to segregation. Active law, under challenge in the PIL at the SC of India

Punjab Municipal Corporation Act, 1976IndiaSegregation/separation

Duty to expel persons suffering from leprosy from market areas leading to segregation. Active law, under challenge in the PIL at the SC of India

Railways Act, 1906SingaporePublic transportation

Persons suffering from leprosy are not allowed to travel by railway

Republic Act No. 4073, 1964PhilippinesSegregation/separation

Segregation and isolation of persons affected by leprosy.

Shri Sanwaliaji Temple Act, 1992IndiaSegregation/separation

Disqualification from membership on the Board for persons suffering from leprosy. Active law, under challenge in the PIL at the SC of India

Shri Shiv Khori Shrine Act, 2008IndiaSegregation/separation

Disqualification from membership on the Board for persons suffering with contagious leprosy. Active law, under challenge in the PIL at the SC of India

Sri Krishnadevaraya University Act, 1981IndiaSegregation/separation

Suffering from contagious leprosy is a ground for disqualification from nomination or membership of any authority of the University and also removal from a position of authority for non-teaching staff and academic staff. Active law, under challenge in the PIL in the SC of India

Sri Venkateswara Vedic University Act, 2006IndiaSegregation/separation

Suffering from leprosy is a ground for disqualification from nomination or membership of any authority of the University. Active law, under challenge in the PIL in the SC of India

Statute Law Chapter 238 Lepers Act, 1928BahamasEmployment
Swimming Pools RegulationHong KongSegregation/separation

Persons affected by communicable diseases, including leprosy, are denied access to private (Cap. 123CA) and public (Cap. 132BR) swimming pools.

Tamil Nadu Excise Act, 1971IndiaEmployment

Provides for non-employment of persons suffering from leprosy. Active law, under challenge in the PIL at the SC of India

Tamil Nadu Hindu Religious and Charitable Endowments Act, 1959IndiaSegregation/separation

Disqualification from membership or continuation on the Trust for persons suffering from leprosy. Active law, under challenge in the PIL at the SC of India

Tamil Nadu Prevention of Begging Act, 1945IndiaSegregation/separation

Removal of persons affected by leprosy from beggary homes and/or juvenile homes to leprosy asylums for indefinite periods. Active law, under challenge in the PIL at the SC of India

Tamil University Act, 1982IndiaSegregation/separation

Removal of persons affected from membership of the university. Active law, under challenge in the PIL in the SC of India

Telangana Micro Brewery Rules, 2015IndiaEmployment

Bar on persons suffering from leprosy to acquire a license if they are to personally handle the stocks leading to denial of employment. Active rule, under challenge in the PIL in SC of India

Telugu University Act, 1985IndiaSegregation/separation

Suffering from leprosy is a ground for disqualification from nomination or membership of any authority of the University. Active law, under challenge in the PIL in the SC of India

The Andhra Pradesh Ayurvedic and Homeopathic Medical Practitioners Registration Act, 1956IndiaEmployment

Disqualified from being or continuing as a member of the committee if suffering from leprosy. Active Act, under challenge in the PIL in SC of India

The Immigration ActBarbadosImmigration related laws

In computing the period of residence required for the acquisition of the status of permanent resident, no period may be counted during which a person is confined to a prison or is an inmate of a hospital for treatment of leprosy or mental disorder.

The Leper’s Ordinance, 1901Sri LankaSegregation/separation

A cabinet paper has been handed over to the Ministry of Health and is currently being reviewed by the legal department of the Ministry of health prior to submission.

The Leprosy Act, 1949JamaicaSegregation/separation

Compulsory detention of leprosy patients

The Rajasthan Rehabilitation of Beggars or Indigents Act, 2012IndiaSegregation/separation

Removal of people affected by leprosy from beggary homes to leprosy asylums. Active law, under challenge in the PIL at the SC of India

The Telangana Prevention of Begging Act, 1977IndiaSegregation/separation

Removal of people affected by leprosy from beggary homes to leprosy asylums. Active law, under challenge in the PIL at the SC of India

Travancore Cochin Public Health Act, 1955IndiaSegregation/separation

Allows for the segregation of person suffering from leprosy from public conveyances, schools, colleges, public libraries, reading rooms and creation of separate segregation areas. Active law, under challenge in the PIL at the SC of India

University of Health Sciences Act, 1986IndiaSegregation/separation

Suffering from leprosy is a ground for disqualification from nomination or membership of any authority of the University. Active law, under challenge in the PIL in the SC of India

University of Hyderabad Act, 1974IndiaSegregation/separation

Suffering from contagious leprosy is a ground for disqualification from nomination or membership of any authority of the University and also removal from a position of authority for non-teaching staff and academic staff. Active law, under challenge in the PIL in the SC of India

US 8 USCS § 1285USAEmployment

Employment on passenger vessels of aliens afflicted with certain disabilities, including leprosy, is prohibited.

Uttar Pradesh Co- operative Societies (45th Amendment) Rules, 2006IndiaEmployment

Disqualified from being or continuing as a member of the committee if suffering from leprosy. Active rule, under challenge in the PIL in SC of India

Uttar Pradesh Prohibition of Beggary Act, 1975IndiaSegregation/separation

Removal of people affected by leprosy from beggary homes to leprosy asylums. Active law, under challenge in the PIL at the SC of India

VI 19 V.I.C. § 77Virgin IslandsSegregation/separation

All known contacts with a person afflicted with Hansen’s disease, including all family connections, by blood or marriage and all persons known to have Hansen’s disease, resident in the Virgin Islands, shall submit to examinations by the Commissioner of Health or by a physician licensed to practice in the Virgin Islands at intervals not to exceed 12 months during the first 10 years following the last contact and thereafter at the discretion of the Commissioner of Health.

Virgin Islands 19 V.I.C. § 79Virgin IslandsSegregation/separation

Persons affected by leprosy, and contacts, who fail to submit to necessary examinations will be fined (up to 100 USD) or imprisoned (up to 180 days) or both.

Visva Bharati Act, 1951IndiaSegregation/separation

Removal of teaching or non-teaching academic staff on the grounds of having contagious leprosy. Active law, under challenge in the PIL in the SC of India

Making a difference in policy and practice

The UN Principles and Guidelines for elimination of the discrimination against persons affected by leprosy and their family members were adopted in 2010. Six years later, Mathias Duck, a member of ILEP’s Advisory Panel, undertook research to find out if they were put into practice. He received responses to a questionnaire from 265 people affected by leprosy is 20 countries about their experience of stigma. Respondents included men and women, old and young, and 67% with visible (Grade 2) disabilities. All had been affected by leprosy for at least one year; 40% had been for 15 years.

The survey explored four major areas where stigma can be found: where someone might be allowed to live, how they experience work, marriage and access to public places.

Residence

Only half of Mathias’s respondents said that they were free to choose where they wished to live.


Work

More than a third of respondents thought that people affected by leprosy were not treated equally at work in terms of hiring and promotion. Two thirds had experienced discrimination.


Marriage

More than half of the respondents thought that leprosy was often or frequently used as a reason for a denial of marriage or grounds for a divorce. In some countries, (China, Liberia, Guinea Bissau and Afghanistan) this figure was much higher.


Access

Less than half of those surveyed said that people affected by leprosy enjoyed equal access to public spaces and that included transportation.


Discriminatory language

More than a third experienced discriminatory language being used against them. One in five respondents heard discriminatory language used against other people.


Recurring themes experienced by people affected by leprosy were as follows:

  • abandoned by family or forced to leave home. (Two in five respondents knew others affected by leprosy who were separated from their family because of their diagnosis)
  • fear of leprosy
  • visible signs of leprosy seem to worsen stigma and climate of secrecy
  • problems using public transport

Participation in Policy-making

Mathias asked his group of respondents if people affected by leprosy are involved in decision-making for policies that impact on their lives and a third responded that they were not involved. However, one fifth had been involved.

State involvement

12% or one in eight respondents were aware of action taken by a state to abolish existing discriminatory laws. 15% confirmed the state’s involvement in family reunification, many people (46%) were not aware of the state’s involvement in family reunification. A quarter of respondents said that the state did not provide information about leprosy to community leaders.  Mathias said that there was little or no evidence of the state’s active involvement as per these statistics.

In conclusion, Mathias summarised that:

  • Discriminatory practices and language are still largely part of the experience of persons affected by leprosy.
  • There is little or no evidence of the state´s involvement in the elimination of discrimination against persons affected by leprosy.
  • The participation of people affected by leprosy is still limited.

In commenting on the findings, Mathias said “It’s great to have the Principles and Guidelines. It’s great to have inclusion as part of the WHO global leprosy strategy, as well as the ILEP strategy. We now need very concrete steps to be taken both at the international and the national level. We know that the Principles and Guidelines represent an ideal that seems very far away in the case of many countries.”

He quoted a Paraguayan proverb “Del dicho al hecho hay un largo trecho” (“from saying to action there is a long way”) and he urged policy makers to keep moving in that direction so that every year, every month, every week and every day, the Principles and Guidelines become more and more real in the lives of people affected by leprosy so every person affected can experience inclusion in their everyday life.

To harm or to heal: the power of words

Mathias Duck, Chair of the ILEP Panel of Men and Women Affected by Leprosy, shares his personal perspective on why it is important not to use the ‘L’ word

Words have power.

Sometimes we give them more power than they should have.

Sometimes we underestimate their power.

Power to encourage or power to discourage.

It’s not just how it is said, but how it is heard and perceived.

The ‘L’ word carries thousands of years of baggage, negative images, preconceived notions, prejudice, myths and stigma. It perpetuates these images, labels people affected and degrades us.

It’s not always meant that way, but that is the effect. It’s part of the English language, part of some laws (in some countries) and part of sacred texts. This makes it even more complex, because the use of the term is enabled and perhaps even blessed.

When we try to reduce stigma, language is important. It is not magic, in the sense that getting rid of the ‘L’ word will eliminate stigma automatically. However, it is a crucial step. In Paraguay this has happened with people living with HIV. A deliberate effort was made to avoid a discriminatory word, while at the same time providing people with respectful alternatives. Over time it helps to change people’s perception.

Words can degrade, but they can also contribute to a sense of dignity and respect.

Statements, submissions and briefings

TopicTitleDescriptionCountryDateDownload
CRPD CommitteeILEP briefing on leprosy to CRPD Committee side event

This is the first formal briefing on leprosy by ILEP to the CRPD Committee. It was delivered to a lunchtime briefing session on leprosy in April 2019. It introduces leprosy as a human rights issue and urges the Committee to include leprosy in the scope of the CRPD Convention.

GeneralApril 2019Download
WHO NTDs STAGILEP partner statement

ILEP outlined its current strategies in connection with the main themes of the WHO NTDs Roadmap and urged the inclusion of leprosy among NTDs that are the subject of current WHO studies regarding the effects of the Covid pandemic

GeneralSeptember 2022Download
International Leprosy CongressILEP plenary statement

At the opening plenary of the Congress, ILEP used the four collaborative projects agreed by Members in June 2022 as a framework to describe ILEP’s emerging priorities and what these priorities say about the role of ILEP in the coming two to three years.

GeneralNovember 2022Download
2nd International Symposium at the Vatican on Hansen’s DiseaseILEP statement

ILEP outlined how it works towards zero leprosy, specifically referring to the conclusions and recommendations from the first Vatican symposium in 2016

GeneralJanuary 2023Download
CRPD CommitteeILEP statement on impact of COVID-19 on persons affected by leprosy, to opening CRPD Committee session

This statement summarised the results of a survey of organisations of persons affected by leprosy about the impact of the pandemic and drew particular attention to intersectionality, where vulnerability caused by leprosy worsens, and is made worse by, other vulnerabilities.

GeneralMarch 2021Download
CRPD CommitteeILEP statement on key themes on human rights and leprosy to opening CRPD Committee session

This statement was delivered during the NGO briefings to the opening session of the 22nd CRPD Committee. It introduces the main themes included in the country-specific ILEP submissions to the 22nd session and the 12th pre-session.

GeneralAugust 2019Download
CRPD CommitteeILEP submission in relation to CRPD Committee’s draft General Comment on Article 27

This submission drew the Committee’s attention to leprosy-specific issues related to the right to work and commented on the draft General Comment from a leprosy perspective. It urged the Committee to explicitly reference leprosy in its final draft.

GeneralMarch 2021Download
Committee on the Rights of the ChildILEP submission on ending discrimination against children from families affected by leprosy in Vietnam

This submission to the 87th pre-session of the Committee on the Rights of the Child recommended a set of actions by the government to protect the rights of children from families affected by leprosy, in line with the Convention on the Rights of the Child.

VietnamMarch 2020Download
CRPD CommitteeILEP submission on ending discrimination against persons affected by leprosy in China

This submission to the 13th Pre-session of the CRPD Committee recommended inclusion in the List of Issues of a set of inclusions assuring the human rights of persons affected by leprosy in China, especially regarding the plight of older people and the leprosy villages.

ChinaFebruary 2020Download
CRPD CommitteeILEP submission on ending discrimination against persons affected by leprosy in India

This submission to the India country briefing at the 22nd CRPD session recommended, among other actions, immediate steps to repeal or amend the 108 discriminatory acts in force in India and to pass the proposed Elimination of Discrimination against Persons affected by Leprosy (EDPAL) legislation.

IndiaSeptember 2019Download
CRPD CommitteeILEP submission on ending discrimination against persons affected by leprosy in Lao PDR

This submission to the 12th Pre-session of the CRPD Committee recommended inclusions on human rights and leprosy in the List of Issues for Lao PDR.

Lao PDRSeptember 2019Download
CRPD CommitteeILEP submission on ending discrimination against persons affected by leprosy in Mexico

This submission to the 12th Pre-session of the CRPD Committee recommended inclusions on human rights and leprosy in the List of Issues for Mexico.

MexicoSeptember 2019Download
CRPD CommitteeILEP submission on ending discrimination against persons affected by leprosy in Myanmar

This submission to the Myanmar country briefing at the 22nd CRPD session recommended a set of actions to improve the human rights situation of persons affected by leprosy in Myanmar.

MyanmarAugust 2019Download
CRPD CommitteeILEP submission on ending discrimination against persons affected by leprosy in Singapore

This submission to the 12th Pre-session of the CRPD Committee recommended repeal or amendment of four discriminatory laws in the List of Issues for Singapore.

SingaporeSeptember 2019Download
CRPD CommitteeILEP submission on ending discrimination against persons affected by leprosy in Venezuela

This submission to the 12th Pre-session of the CRPD Committee recommended inclusions on human rights and leprosy in the List of Issues for Venezuela.

VenezuelaSeptember 2019Download
Global Disability SummitILEP’s commitments on disability inclusion

ILEP joined several hundred organisations in making a set of commitments, about what ILEP will do in the next 3-4 years towards disability inclusion, including the meaningful engagement of organisations representing persons affected by leprosy.

GeneralFebruary 2022Download
WHO Skin NTDs FrameworkIntegration with Skin NTDs on the road to zero leprosy

Responding to prepared questions, ILEP expressed its view on the advantages and disadvantages of the new Skin NTDs Framework in relation to leprosy

GeneralJune 2022Download
Universal Periodic ReviewReport on human rights situation of persons affected by leprosy in Mozambique

ILEP partnered in this submission by three of its member associations and two organisations of persons affected by leprosy to the 38th cycle of the Universal Periodic Review, with recommendations to prevent ongoing social exclusion and provide adequate care to persons affected by leprosy in Mozambique.

MozambiqueOctober 2020Download
Universal Periodic ReviewReport on human rights situation of persons affected by leprosy in Sierra Leone

ILEP and one of its member associations supported this submission written by the National Association of Persons Affected by Leprosy in Sierra Leone to the 38th cycle of the Universal Periodic Review, with recommendations to address issues related to stigma and discrimination and  support persons affected by leprosy into employment, inclusion and independent living.

Sierra LeoneOctober 2020Download
Universal Periodic ReviewReport on the human rights status of persons affected by leprosy and disability in Papua New Guinea

ILEP partnered with The Leprosy Mission PNG and two local coalitions of persons with disabilities in this submission to the 39th cycle of the Universal Periodic Review, with recommendations to uphold and protect the rights of persons affected by leprosy and persons with disabilities in Papua New Guinea.

Papua New GuineaApril 2021Download
Universal Periodic ReviewReport on the human rights status of persons affected by leprosy and disability in Timor Leste

ILEP partnered with The Leprosy Mission Timor Leste and five local organisations or coalitions of persons with disabilities in this submission to the 40th cycle of the Universal Periodic Review, with recommendations to uphold and protect the rights of persons affected by leprosy and persons with disabilities in Timor Leste.

Timor LesteAugust 2021Download
Universal Periodic ReviewReport on the human rights status of persons affected by leprosy in Nepal

ILEP partnered in this submission to the 37th cycle of the Universal Periodic Review of recommendations to prevent ongoing social exclusion and stigmatisation of persons affected by leprosy in Nepal.

NepalJune 2020Download
CEDAW CommitteeReport on the situation of women affected by leprosy in Indonesia

ILEP supported this submission by 14 organisations in Indonesia to the  78th pre-session of the CEDAW Committee. It proposes a series of government actions to promote the rights of women affected by leprosy in Indonesia within the CEDAW framework.

IndonesiaJune 2020Download
Universal Periodic ReviewReport on the stigma and discrimination faced by persons affected by leprosy in Myanmar

ILEP supported this submission by one of its member associations and a civil society organisation in Myanmar to the 37th cycle of the Universal Periodic Review, containing recommendations to prevent ongoing social exclusion and boost the inclusion of persons affected by leprosy in Myanmar.

MyanmarJune 2020Download
Bergen International Conference on Hansen's diseaseSpeech on NGO role in combatting stigma

The ILEP CEO proposed six ways in which ILEP members and other NGOs can contribute to the goal of zero leprosy-related stigma and discrimination. He also suggested reasons why States are slow to repeal and amend discriminatory laws.

GeneralJune 2023Download
Human Rights CouncilStatement in response to report by UN Special Rapporteur

ILEP’s statement welcomed the report and recommendations of the UN Special Rapporteur and emphasised the need for a whole-government approach to ending discrimination in healthcare, education and employment.

GeneralJune 2021Download
Human Rights CouncilStatement in support of Special Rapporteur – Leprosy presentation to Human Rights Council

ILEP supported the framework for inclusion recommended in the presentation of Alice Cruz to the Human Rights Council and urged renewal of her mandate as Special Rapporteur.

GeneralJuly 2020Download
Human Rights CouncilStatement in support of Special Rapporteur’s presentation to the Human Rights Council

ILEP supported the Special Rapporteur’s report and recommendations related to the right of people affected by leprosy to the highest attainable standard of physical and mental health.

GeneralJune 2022Download
Human Rights CouncilStatement in support of Special Rapporteur’s presentation to the Human Rights Council

ILEP’s statement welcomed the report and gave ILEP’s own perspective on the achievements of the mandate during the past six years. It also highlighted the long list of remaining challenges and the related recommendations of the UN Special Rapporteur, and echoed the call by organisations of persons affected by leprosy to extend the mandate.

GeneralJune 2023Download
CRPD Conference of State PartiesStatement on livelihoods and the right to work, for persons affected by leprosy

At a side event, ILEP proposed a set of interlocking approaches through which NGOs can work with governments to promote livelihoods and the financial independence of people affected by leprosy so that they are not even more left behind.

GeneralJune 2021Download
Advocacy workshopStatement regarding discriminatory legislation

ILEP urged repeal of the discriminatory marriage law, with reference to Nepal’s obligations under the CRPD Convention and other relevant factors

NepalSeptember 2022Download
CRPD CommitteeSubmission in relation to initial CRPD report of Bangladesh

This submission to the Bangladesh country briefing at the 23rd CRPD session proposed a set of actions to improve the human rights situation of persons affected by leprosy in Bangladesh.

BangladeshFebruary 2020Download
CRPD CommitteeSubmission on ending discrimination against persons affected by leprosy in Angola

ILEP supported this submission by two civil society organizations in Angola to the 13th Pre-session of the CRPD Committee. It recommends inclusion in the List of Issues of a range of actions to reduce stigma, poverty and human rights abuses suffered by people affected by leprosy in Angola.

AngolaFebruary 2020Download
CRPD CommitteeSubmission on ending discrimination against persons affected by leprosy in Indonesia

ILEP supported this submission by 14 civil society organizations in Indonesia to the 13th Pre-session of the CRPD Committee. It recommends inclusion in the List of Issues of a set of measures promoting the rights of persons with leprosy related disabilities in Indonesia within the CRPD framework.

IndonesiaFebruary 2020Download
CEDAW CommitteeSubmission on ending discrimination against women affected by leprosy in Ethiopia

ILEP supported this submission by one of its Member associations to the 72nd session of the CEDAW Committee covering government actions to improve the human rights situation of women affected by leprosy in Ethiopia.

EthiopiaFebruary 2019Download
CRPD CommitteeSubmission on human rights of persons affected by leprosy in Pakistan

ILEP coordinated a submission to the 19th Pre-session of the CRPD Committee recommending inclusion in the List of Issues of a set of measures assuring the human rights of persons with disabilities, including persons affected by leprosy, in Pakistan, especially regarding the plight of older people and the leprosy villages.

PakistanJanuary 2024Download
World Health AssemblySubmission on UHC

ILEP supported a constituency statement urging Member States to champion health equity for persons with disabilities, and ensure accessibility of person-centred primary health care close to where people live and reaching the furthest behind first.

GeneralMay 2023Download
WHO South East Asia Regional CommitteeWritten statement regarding impact of COVID-19 on persons affected by leprosy

ILEP summarised key concerns around COVID-19 and urged WHO and Ministries to work with leprosy program managers on safe and effective transition to the ‘new normal’ and innovative approaches to the continuum of care during ongoing pandemic.

GeneralSeptember 2020Download
WHO Western Pacific Regional CommitteeWritten statement regarding impact of COVID-19 on persons affected by leprosy

ILEP summarised key concerns around COVID-19 and urged WHO and Ministries to work with leprosy program managers on safe and effective transition to the ‘new normal’ and innovative approaches to the continuum of care during ongoing pandemic.

GeneralOctober 2020Download

UN Principles and Guidelines

In 2010 the UN General Assembly and the Human Rights Council adopted the Principles and Guidelines for elimination of the discrimination against persons affected by leprosy and their family members. These Principles and Guidelines make national governments responsible to eliminate leprosy-related discrimination. They form an excellent roadmap on how to enforce legally binding human rights that are routinely violated towards persons affected by leprosy and their family members. Many of the Principles and Guidelines mirror the rights enshrined in the Convention on the Rights of Persons with Disabilities (CRPD). The preamble of the CRPD recognises the need to promote and protect the human rights of all persons with disabilities, including those who require more intensive support. ILEP argues that persons with leprosy-related disabilities or disadvantaged by the label ‘leprosy’ are the very ones who need this intensive support.

Regrettably, the Principles and Guidelines are non-mandatory and have largely been ignored, so that at state and community level, the same human rights abuses persist. Nevertheless, ILEP routinely refers to the Principles and Guidelines in submissions to the various human rights instruments of the OHCHR. Through this, we urge governments to implement the Principles and Guidelines as a significant contribution to enabling persons affected by leprosy to live with dignity.

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Rachna’s story

Rachna Kumari was 24 when she discovered she had leprosy. The crippling stigma that she experienced has enabled her to understand and help those living with the disease in Bihar, India.

Her husband supported her when she was diagnosed with leprosy but due an unfortunate incident, he died.  She was compelled by circumstances to raise her children on her own.

“When I got this disease, the attitude of the family and society changed completely. They deserted me, which made me heart-broken and even more, made me think why is this happening? As I am cured today, I have the opportunity to serve people affected by leprosy. I understand my rights and I am working to help others and also taking care of my children. Why cannot others also have this life?”

“I just say one thing to people with leprosy. We have to bring them into mainstream life without any discrimination.”

Today Rachna also sits on the ILEP Advisory Panel of men and women affected by leprosy, working towards Zero Discrimination so others will not suffer the loneliness and isolation she did.

Girls & women affected by leprosy

Women affected by leprosy already make up some of the worlds’ poorest and most marginalised groups. In many societies, girls and women with disabilities are particularly vulnerable to abuse. Gender is therefore an important area of ILEP’s focus. We are committed to working with partners to help tackle this inequality and protect the dignity and human rights of all people affected by leprosy.

Girls and women affected by leprosy are triply discriminated against because of their gender, the disabilities that can result from the disease and the stigma associated with it.

Abandoned and socially vulnerable

A recent review noted that women affected by leprosy are at risk of being abandoned and socially vulnerable. Some women with leprosy are sexually abused.

Violence

A study in Nepal by ILEP colleagues found that women affected by leprosy experienced a higher degree of sexual abuse by husbands than other women (with or without disabilities).

Not only is violence against women a significant public health problem, it is also a fundamental violation of women’s human rights. Research has highlighted that there is still much to be done in our advocacy for women and leprosy. ILEP continues to shine a spotlight on the challenges of leprosy and how it affects women, particularly as it pushes for Zero Transmission, Zero Disability and Zero Discrimination.

Violence against women takes many forms including but not restricted to: domestic abuse, rape, child abuse, prostitution, human trafficking, psychological abuse, economic abuse, forced marriage and ‘honour’ crimes.

Worldwide, one in three women (35%) is physically or sexually abused during her lifetime; most of this is intimate partner violence.

Violence against women constrains poverty reduction efforts by reducing women’s participation in the community and lowers women’s access to education.

Click here to read Kalpana’s story; a woman affected by leprosy, subjected to violence from her husband, supported by Lepra and several years later, building a business and a new life.

Neru’s Story: Losing out on childhood and schooling

Neru was only eight when she discovered she had leprosy. Her mother had noticed patches on Neru’s body and Neru also complained of numbness in her right hand and right leg. As time went on this numbness worsened and her hand began to stiffen and she could no longer open or close her hand, or hold things easily. Her mother took her to a government hospital where she was diagnosed with an aggressive form of leprosy and started on a multi-drug therapy. Neru did not realise how serious the diagnosis was and what impact it could have. “The doctor told me that I had leprosy, I did not feel anything but I could see my mother was very sad” she says.

Although Neru was started on a year’s course of the drugs, the prejudice and discrimination she faced showed that a physical cure was not all that she would need.

“I went to school the next day and the dinner lady, just as I approached her with a plate for food, shouted at me and told me that ‘you don’t need to come to school anymore’. After that me and the other students affected by leprosy ran from the school to home. I felt so sad about it and I cried a lot. I decided not to go school again and stopped my studies.”

This stigmatization of Neru extended to her family and her life outside of her education. “We were taking water from the hand pump near school,” she says, “People did not allow us to take water from that hand pump and were telling us that we may spread leprosy to other village people. We decided to go further away to get drinking water.”

After such treatment, it was hard for Neru not to absorb this feeling of shame: “I also felt that I have very serious disease which may spread to my family members so I just kept my distance from them and I was hiding my hand when people came to my home. I was frightened about the people in our village, I could not go anywhere to play.”

Although she had completed the year’s course of the multi-drug therapy, leprosy had caused Neru to lose out on her childhood; it had prevented her from being a part of a community and meant that for more than two years, she stopped her education.

As part of ILEP Member Lepra’s outreach, they give talks to communities, and one day they visited Neru’s village. They were able to explain to her mother how they could help her daughter with reconstructive surgery, and how they would be able to provide the funding, as well as pre- and post-operative physiotherapy. The surgery, along with the physiotherapy would mean Neru would have to stay in the hospital for 45 days. But with this treatment, she would regain full use of her arm and leg.

In the late spring of 2017, Neru had reconstructive surgery at the St Joseph Leprosy Centre in Madhya Pradesh. By this point, she had also developed a partial foot drop on her right leg, which meant she could no longer lift her foot at the ankle. She had a course of physiotherapy and Lepra also gave her customised protective footwear to strengthen her ankle muscles. With Lepra’s help, and through determination and family support, Neru was able to make a recovery. She could walk more easily and use her hand again.

She began to regain some of the confidence that she used to have. At the centre, she made friends and found new support from the people she met during her treatment. She also started to study once more and, as her community had heard our health awareness talks, they no longer feared the disease so she was able to use the village water pump again. However, Neru was still frightened to go back to school, worried of how she would be treated there.

Because Lepra recognizes the broad and damaging affects leprosy can have, they don’t just supply medical treatment, but emotional and practical support to individuals and family’s living with the disease. They visited the school and told the teachers her story and they were happy to allow her back, even after almost a three-year gap.

She even met the dinner lady who had turned her away: the woman took her hand, looked at it, and said how glad she was to see it healed. She said that she would look to see if any other child was showing symptoms of leprosy and refer them to the government hospital.

At first Neru’s diagnosis seemed like an end to her childhood, her education and her place in the community. Now she has returned to school and what is more wants to become a teacher herself: “I want to become teacher in our village and I will teach all the students very well,” she says.

A life after leprosy

Thy’s mother was a former leprosy patient. She noticed patches on him, and when examined he too was diagnosed with leprosy. Thy’s leprosy was diagnosed and treated early so he won’t run the risk of developing disabilities. This is Thy’s story.


Independence, mobility and dignity

Nigeria, bordered by Benin, Chad, Cameroon and Niger, has the largest population in Africa with over 186 million people. In recent years, conflict has been rife including the brutal and long-running Boko Haram insurgency throughout north-eastern Nigeria, frequent bouts of militancy and piracy in the Niger Delta and increasingly common communal violence across central Nigeria. Despite the country being rich in oil, few Nigerians have benefited and some of the country’s biggest problems include corruption, crime, a lack of infrastructure and unemployment. These issues are hardest on the poor.

Chanchaga Orthopaedic Workshop in Minna, Niger State, Nigeria is one of the few orthopaedic workshops in Nigeria. The workshop produces mobility devices such as prosthetic limbs and moulded shoes for people with leprosy-related impairments and other disabilities, and distributes other devices such as crutches, wheelchairs and protective footwear.

Because of the orthopaedic team marketing their services, by visiting other hospitals and traditional bone setters, an increasing number of paying clients are helping to subsidise the service offered to leprosy affected people. For example, the team was asked to make a specialised brace for two soldiers which was completed to such a high standard that it has led to referrals to the workshop to help other Nigerian soldiers injured during the conflict with Boko Haram.

Photo credit: The Leprosy Mission England & Wales

Nigeria was severely affected by recession throughout 2016 and 2017 caused by the oil price crash, devaluation of the Naira and continued conflict with Boko Haram, and this has doubly impacted the workshop by increasing the costs of component parts and making it harder for potential general patients to afford the workshop’s products and services.

ILEP Member The Leprosy Mission is helping the workshop to become a more sustainable social enterprise: continuing to serve people affected by leprosy for free, but also increasing its customer base to include other people with disabilities and providing a wider range of quality orthopaedic services and products. The workshop is also improving its marketing activities, and upgrading its facilities and services.

Ashar’s story

Photo credit: The Leprosy Mission England & Wales

Ashar is about 50 years old. He has seven siblings, three brothers and four sisters. His parents were farmers and traders. Neither his parents nor his any of his siblings have had leprosy. When he was about 18 years old he noticed that he had discoloured patches on his skin on his face, cheeks and forehead, and he was diagnosed with leprosy in 1985.

For many years he was treated with traditional medicine for his leprosy which had no effect. It was only when he started losing his fingernails that he went to a leprosy hospital where he was treated with the correct multidrug therapy. Because of the characteristic lack of sensation in his feet, Ashar had trodden on stones which pierced his feet and then caused wounds and ulcers and he was confined to a wheelchair. Ashar’s hands are also severely deformed due to leprosy.

The team at Chanchaga Orthopaedic Workshop made some disability aids for Ashar which fit to his wrist using Velcro. He can use these to hold a toothbrush, spoon or torch so that he is more independent. He says, “life is much easier now.”

Binta Alhassan Abubakar: Diagnosis gives answers and hope

At 12 years of age, Binta Alhassan Abubakar began to show signs of being affected by leprosy.

“Nobody knew what the symptoms were,” she said. “My father dismissed it as a common illness which would pass soon. After two years, the symptoms worsened and I was taken to a native medicine man who kept giving me herbal medications to take.”

The illness continued to progress for several years and Binta began to have problems with ulcers that would not heal.

“My legs and hands began to grow worse.

That was when my father took me to Chanchaga Hospital in Minna, Nigeria. Although I started receiving treatment almost immediately, the ulcers had worsened from my legs up to my knees and from my hands up to my wrists.”

Though her recovery was long, afterwards Binta travelled back to her hometown where she married her husband of 18 years.

In 2017, Binta received startup funds to begin a sheep rearing business. The family was able to buy three sheep (two females and one male). They have now raised seven sheep and sold one. With the funds from this sale they were able to pay school fees for their children, buy them books and clothing and they have been eating well.

“What brings us great joy is that the sheep was bought by a rich non- leprosy-affected man. We were glad because our sheep was accepted by others even though they knew we had leprosy,” said Binta.

Sister Julia Thundathil’s story: Fighting the spread of leprosy

A chance encounter between a Catholic nun and a group of elderly people affected by leprosy in the central Indian state of Madhya Pradesh more than twenty years ago proved a turning point in the lives of the six leprosy patients – and many hundreds more like them.

“I found them on the roadside with worms coming out of their wounds.” Sister Julia Thundathil recounts of that visit to the village of Sendhwa. They had not eaten for days and their wounds were attracting flies. People often chased them away.

After speaking to them and being moved by their “heartbreaking stories,” the Augustinian nun and trained social worker returned to the convent to get medicine for their wounds and a bucket for bathing. This was not a singular act of compassion – the encounter inspired her to dedicate her life to working to help people affected by leprosy. And crucially, to break the cycle of transmission.

The enclave she went on to set up in Sendhwa is now home to more than 250 leprosy patients from 85 families.

Sister Julia believes that “the hasty spread of leprosy and stigma” is one of the biggest problems facing social workers in the area. She explains that “often to prevent discrimination patients try to hide their disease by not immediately seeking medical help on finding signs of leprosy. Stigma attached to leprosy leads to loss of employment even before manual labour becomes difficult due to disabilities that often result from late or no treatment. It also leads to exclusion from society, causing physical and emotional distress.”

To help halt the transmission of leprosy, staff at the enclave run early detection camps to identify those with the disease, so they can get immediate treatment. Patients are monitored and tracked, and receive health education.

“There are unfortunately still many barriers to stopping this preventable disease once and for all,” she says. “There is a shortage of accessibility to water and sanitation; there are delays in beginning treatment for patients, including insufficient medicine and not enough doctors; and there is the crippling social stigma and discrimination.”

As well as personally caring for those living with leprosy, Sister Julia tirelessly advocates for early diagnosis and treatment (through improvements in the government health system and leprosy screening) as well as programmes to reduce the level of stigma in the community. She believes both approaches are needed to reduce and ultimately stop the spread of the disease.

The social benefits gained from ending leprosy, she reflects, will be immense. “I believe that if we can successfully stop the spread of this crippling disease, we will see a day of zero transmission of disability which leads to zero disability, leads to zero stigma and a more inclusive society.’’

Submission on ending discrimination against persons affected by leprosy in Angola

ILEP supported this submission by two civil society organizations in Angola to the 13th Pre-session of the CRPD Committee. It recommends inclusion in the List of Issues of a range of actions to reduce stigma, poverty and human rights abuses suffered by people affected by leprosy in Angola.

Submission in relation to initial CRPD report of Bangladesh

This submission to the Bangladesh country briefing at the 23rd CRPD session proposed a set of actions to improve the human rights situation of persons affected by leprosy in Bangladesh.

ILEP submission on ending discrimination against persons affected by leprosy in China

This submission to the 13th Pre-session of the CRPD Committee recommended inclusion in the List of Issues of a set of inclusions assuring the human rights of persons affected by leprosy in China, especially regarding the plight of older people and the leprosy villages.

Submission on ending discrimination against persons affected by leprosy in Indonesia

ILEP supported this submission by 14 civil society organizations in Indonesia to the 13th Pre-session of the CRPD Committee. It recommends inclusion in the List of Issues of a set of measures promoting the rights of persons with leprosy related disabilities in Indonesia within the CRPD framework.