3 OPLs, 3 examples of advocacy success

Are persons affected by leprosy really powerful advocates? Here's the proof.

3 OPLs, 3 examples of advocacy success

APAL, India

What advocacy victory did you have?

We have ensured access to disability pensions and housing rights for persons affected by leprosy, as well as influencing officials to restore suspended pensions.

What did you do to make this victory possible?

In urgent response to the suspension of pensions, we pulled together a network of powerful voices across the APAL State Committees, colony leaders, youth leaders, and APAL executive members. We visited state capitals and government offices and met directly with officials and government leaders. We submitted memorandums, held protests, and arranged follow-up meetings.

Challenges

Sometimes pensions would be suspended without prior notice and we were faced with government indifference and bureaucratic delays. There is also a lot of leprosy stigma and leprosy is never a political priority.

We overcame this with persistent follow-ups with officials, by mobilising communities, and engaging the media. It also made a difference when we built alliances with supportive political leaders.

What could other organisations learn from this success?

Strong grassroots mobilisation combined with direct political advocacy is powerful.

Building trust and unity among affected people amplifies their voice.

Persistence and relationship-building with government officials leads to results.

Linking individual hardships to systemic rights issues helps secure policy-level change.

Photo: Maya Ranavare from APAL won The Leprosy Mission's Wellesley Bailey Award in 2024 in recognition of her excellent advocacy work.

MORHAN, Brazil

What advocacy victory did you have?

Back in 2007, we lobbied for the approval of law 11,520, which created a task force so that around 10,000 people who were forcibly segregated into Hansen's Disease colonies would receive financial compensation (reparations). Last year, we succeeded in having that law extended to also include the children of people affected by Hansen's Disease, who were forcibly removed from their parents when their parents were segregated into the colonies.

What did you do to make this victory possible?

This achievement required more than 14 years of struggle. Since 2011, we have carried out several actions such as Special Sessions in City Councils, Legislative Assemblies in Brazilian states, State Meetings with Separated Children, Meetings in Federal Government Ministries, etc.

In the State of Pará alone, from 2015 to 2022, Edimilson Picanço (the National Coordinator of Children Separated by Compulsory Isolation of Hansen's Disease) organised 15 meetings and three state meetings with separated children, a special session in the Legislative Assembly of the State of Pará, and two special sessions in the City Councils of Marituba and Igarapé Açu.

Challenges

It was a tireless struggle and we hard ‘no’ many times, but we had the support of the majority of the Separated Children and the backing of MORHAN.

President Lula signs the legislation MORHAN had lobbied for.

What could other organisations learn from this success?

Political leaders want to hear personal stories

Edimilson Picanço was invited to speak on the day of the signing of Decree 123.12 in front of President Luiz Inácio Lula da Silva at the Federal Government Palace. He told the story of his life, including the separation of his parents from him and his three brothers. This was a story that President Lula wanted the world to hear.

Persistence and belief

In the words of Edimilson, "First, believe in God. Remember there is no victory without struggle. Insist and persist. Use the support of the people behind you to encourage you when you are always hearing ‘no'.

Edimilson Picanço speaking about this campaign to the supporters of MORHAN

IDEA Nigeria

What advocacy victory did you have?

IDEA Nigeria's advocacy victory involved pushing for the provision of leprosy drugs in Nigeria after a year-long stock-out.

What did you do to make this victory possible?

We engaged the Nigerian government with the help of international organisations like the World Health Organization, they were able to secure a shipment of leprosy drugs, ending the stock-out that had lasted for over a year.

IDEA Nigeria, led by President Peter Terver Iorkighir, raised awareness about the stock-out and its consequences through press conferences and media outreaches. We advocated for urgent action from the government and regulatory agencies, including NAFDAC, and called on the minister of health to intervene and resolve bureaucratic hurdles stalling the MDT supply.

Challenges

There were bureaucratic bottlenecks and requirements from regulatory agencies that made this very hard work. We could only overcome this with persistence, by continually raising awareness, and by collaborating with stakeholders.

What could other organisations learn from this success?

Persistent and continuous advocacy efforts can lead to significant victories.

It is important to collaborate and work with stakeholders like government officials, NGOs and regulatory agencies to facilitate progress. Leveraging leadership and engaging with high-level leaders can help resolve bureaucratic hurdles.

News coverage of IDEA Nigeria's advocacy efforts