Ending Discrimination

Our progress towards

ending discrimination

Since 2019, TLM has increasingly focused on supporting self-representation and self-advocacy by people affected by leprosy and disability. Their lived experience of life with leprosy is important in guiding all matters that are about them, about leprosy, disability, NTDs and their communities.

Throughout this strategic period, persons affected by leprosy have been supported to self-advocate at community, national and international level. This journey has not been simple or easy, as for the longest time persons affected by leprosy have been represented by others. Their input was mainly restricted to sharing their life history and seeking help.

Through systematic rights awareness and skills training, and access to networking opportunities and partnerships, TLM is supporting people affected by leprosy to change this so they can actively participate in the work to end leprosy.

Because of this, persons affected by leprosy have been able to advocate for improved services in their communities, for access to employment and social security, and for an end to discrimination in law and practice.

Suleiman's battle with leprosy began when he was just 15 years old. Visible signs of leprosy brought the pain of social stigma and discrimination.

Three discrimination victories from the Global Strategy 2019-2024

In 2019, TLM committed to strengthening organisations of persons affected by leprosy, to challenging discriminatory laws and practices, and to support persons affected by leprosy to become self-advocates. Here are some victories in this week over the 2019-2024 strategic period.

Investing in Organisations of Persons Affected by Leprosy (OPLs)

This has happened at the national and international level since 2019. At the national level, our teams have been working with OPL teams to build the skills and opportunities they need to strengthen their organisations. This has included working on funding, good practice, and programme implementation. In 2022, TLM supported OPL representatives to attend the Global Forum of OPLs in Hyderabad. This important forum was a crucial opportunity for these organisations to learn from one another and present a united front.

Élodie, member of OPALCO (Organisation des Personnes Affectees Par

la lepre au Congo).

2. Building up self-advocates

All across the world, we have seen self-advocates take on the challenge of fighting for a world without leprosy. They have become leaders in the charge to zero discrimination, with nearly 50,000 people supported to self-advocate. In 2023, TLM established its first advocacy working group, which includes three persons affected by leprosy who are experts in advocacy. One of the high points of this process was in 2023, when Ana Ivonia, a young woman from Timor-Leste, addressed the United Nations in New York.

Elizabeth is part of OPALCO (Organisation des Personnes Affectees Par la lepre au Congo).

3. Changing laws and policies for the better

Through advocacy across the world, discrimination in law and policies has been challenged by our teams. In Nigeria, this led to disability-inclusive elections. In Niger, we are working with the government to ensure health staff no longer exhibit discriminatory behaviour. In India, tireless efforts to repeal discriminatory laws have led to a Supreme Court directive and many laws already repealed. Advocacy has taken huge strides since 2019 and more is planned for the future.

One for the future

The future of the fight to end discrimination must be driven by Organisations of Persons Affected by Leprosy with support from The Leprosy Mission and other NGOs. We have established a new Task Force that will work on supporting these organisations in the years to come. Their potential is exemplified by our 2024 Wellesley Bailey Award winners.

^{2024 Wellesley Bailey Award winners.}

U Soe Win

U Soe Win from MAPAL, a 66-year-old from Myanmar, began showing symptoms of leprosy at age 30, which marked a turning point in his life as a once-successful farmer. After living with the disease for a decade, he received Multi-Drug Therapy (MDT) in 1994, which significantly improved his health.

In 2010, selling his vegetables directly at the market helped him regain confidence and a sense of purpose. The following year, he joined a leprosy awareness event organised by The Leprosy Mission Myanmar, which led to his acceptance by the community and the formation of a Self-Help Group.

^{2024 Wellesley Bailey Award winners.}

U Soe Win

His advocacy journey grew as he attended a Community-Based Rehabilitation Forum in Yangon in 2012, marking his first trip outside his hometown. He began speaking at public events, including a regional ministerial event and the United Nations in Geneva. In 2015, he participated in the 3rd Asia-Pacific CBR Congress in Tokyo. His tireless work led to the formation of the Myanmar Association of Persons Affected by Leprosy (MAPAL), where he now serves as Chairperson, representing 581 members across the country.

“This gave me so much confidence; I was excited to do things for people like me, to be a part of a group that supported each other. my self-esteem was restored and I was finally able to stand proudly in front of other people again.”

U Soe Win was an awardee of the 2024 Bailey Award. He received the award during the TLM 150th anniversary celebration in Delhi, India

^{2024 Wellesley Bailey Award winners.}

Sandra Dongo Botolo

Sandra first noticed signs of leprosy at the age of nine. But it wasn’t until 2014—20 years after the first mark appeared—that she finally received a diagnosis. By the time she reached the Clinique Universitaire de Kinshasa, the disease had caused severe wounds on her hands and legs, leading to the loss of her toes. The clinic referred her to the National Leprosy Elimination Programme, which confirmed she had leprosy. To access her medication, Sandra had to travel more than 10 kilometres.

We are affected and face a lot of challenges here. But those who live in villages have even more. So we created OPALCO to improve peoples socio-economic lives.”

^{2024 Wellesley Bailey Award winners.}

Sandra Dongo Botolo

Four years after her symptoms began, Sandra was forced out of her family home. She was taken in and cared for by Catholic Sisters for three years. Though she returned home in 2001, ongoing leprosy reactions continued to affect her health—and in 2023, her family rejected her once again.

Despite these challenges, Sandra became a powerful advocate for people affected by leprosy. In 2021, she was elected Coordinator of OPALCO. Under her leadership, the organisation has expanded its reach across the Democratic Republic of Congo.

Sandra was an awardee of the 2024 Bailey Award. She received the award during the TLM 150th anniversary celebration in Delhi, India

^{2024 Wellesley Bailey Award winners.}

Md. Kamal Uddin

Kamal was first diagnosed with leprosy in 1969, at a time when there was no effective cure. Because of the war in Bangladesh, treatment options did not reach him until 1972.

The disease left a lasting impact on his body: his left hand developed clawed fingers, and he lost 2 fingers on his hand. He suffered from chronic ulcers on his feet and underwent surgery to correct vision impairments caused by the disease.

Eventually, Kamal changed professions and opened a small food shop. However, the business was short-lived, as customers stopped purchasing from him once they found out about his leprosy

^{2024 Wellesley Bailey Award winners.}

Md. Kamal Uddin

Kamal also faced deep social stigma: higher secondary education, tea shops and restaurants, community gatherings, employment, and marriage were all out of reach. Despite these obstacles, Kamal remained determined. In 2008, he joined a self-help group supported by The Leprosy Mission. Just a year later, he was elected Chairman of his local group. By 2010, he was leading at the federation level, and in 2012, he became Chairman of the Disadvantaged Peoples’ Association (DAPA), where he represented 3,451 members across 275 self-help groups.

In 2018, Kamal became the founding Chairman of the Advancing Leprosy and Disadvantaged Peoples’ Opportunities Society—now known as the ALO Society. Today, this national organisation supports around 20,000 members through 1,700 self-help groups across 29 districts of Bangladesh.

Kamal was an awardee of the 2024 Bailey Award. He was unable to attend the award ceremony in Delhi, but the award was brought home for him by the Chair of TLM Bangladesh

^{2024 Wellesley Bailey Award winners.}

Maya Ranavare

Maya was born into a leprosy colony, the daughter of a mother affected by the disease. At just six years old, she was diagnosed with leprosy herself. She experienced stigma and deep discrimination from a young age. Maya was denied access to education—adding yet another barrier to her already difficult childhood. As she grew older, these challenges followed her into adulthood. Rejected in the formal job market, Maya was forced to take up low-paying, menial work just to survive. Maya became a fierce advocate for the rights and future of all children in her community.

She dedicated herself to creating a better future for all the children in her community and breaking the cycle. Maya arranged for her daughters to marry outside the colonies, giving them the chance to live free from the stigma of leprosy.

^{2024 Wellesley Bailey Award winners.}

Maya Ranavare

A turning point came when Mr Suresh Shipurkar and Mr Dipak Devlapurkar arrived in the colony. Their support helped ignite a wave of transformation that Maya would come to lead.

She began working with Kushtpidit Sanghatana, a state-level organisation, where she successfully helped secure maintenance allowances for over 3,000 people affected by leprosy. As a mentor with livelihood programmes run by the Sasakawa India Leprosy Foundation and the Bajaj Foundation, Maya built strong ties with local officials and political leaders, advocating for better civic infrastructure and services within the colonies. She serves as Chairperson of Sakshi Vikas Sanstha and as Treasurer of APAL (Association of People Affected by Leprosy), continuing to champion rights and dignity.

Maya was an awardee of the 2024 Bailey Award. She received the award during the TLM 150th anniversary celebration in Delhi, India