NEWS & EVENTS

APAL Moti Sagar (Sitamarhi) Leprosy Ashram Visit:

On June 12, the APAL State Committee visited the Moti Sagar Leprosy Ashram located in Sitamarhi, Korba. The ashram supports children studying up to the 11ᵗʰ standard through scholarship programs, ensuring their education is not disrupted despite health challenges. During the visit, it was observed that this colony consists of 28 houses with a total of 85 residents affected by leprosy. A critical need noted was the uninterrupted availability of daily medications and ulcer care, which are essential for both children and adults to maintain their treatment regimen and prevent complications.

Leprosy Ashram, Mudapar (Korba):

Later in the day, the team visited another leprosy-affected colony in the area—referred to locally as the Leprosy Ashram at Mudapar. This community comprises 24 households with 35 individuals currently undergoing treatment. Among them, six people are affected by “pushp” (ulcerated lesions), which require immediate and focused medical attention. The APAL team emphasized the importance of establishing a consistent supply chain for daily drugs as well as dressing materials to manage ulcers effectively and avoid disability.

Community Self‑Care Training at Dildar and Beldar Paras:

In parallel, APAL members conducted self-care training sessions in two nearby paras—Dildar Para and Beldar Para. These sessions covered essential practices such as daily wound cleaning, proper dressing techniques, and hygiene habits to prevent secondary infections. By empowering residents with practical self-care knowledge, the committee aimed to reduce the burden on healthcare providers and promote sustained ulcer management at the community level.

Summary of Imperatives and Future Action Plan:

The June 12 visit underscored several urgent needs across the colonies:

A stable supply of daily leprosy medication for both children and adults, especially in educational settings like Moti Sagar.

Access to ulcer care supplies, including dressings and antiseptics, particularly for the six residents with pushp.

Continued scholarship support for school-going children to link health and education outcomes.

Ongoing self-care initiatives in paras to reinforce skills and independence in managing leprosy complications.

With 85 individuals in Sitamarhi and 35 in Mudapar, making a combined total of 120 people affected, the APAL State Committee’s coordinated efforts to deliver medication, education, ulcer care, and community training are vital. Sustained follow-up, resource mobilisation, and caregiver empowerment will significantly improve health outcomes and prevent further disabilities.

APAL Submission of Memorandum to the Governor of Bihar for Leprosy Pension Increase

On 10th June 2025, APAL’s State Committee in Bihar was to request the honourable Governor of Bihar, Mr. Arif Mohammad Khan, to increase the disability pension amount for persons affected by leprosy in the state.

During the visit, an official application was submitted at the Governor’s office seeking an appointment to discuss the issue in person. The committee hopes to receive a call for a direct meeting soon, which will enable further dialogue and follow-up reporting on the matter.

Participation of APAL in NDMA Meeting on Support for Persons with Disabilities in Disasters

4th & 5th June 2025, New Delhi

On the 4th and 5th of June 2025, the National Disaster Management Authority (NDMA) convened a pivotal meeting in New Delhi aimed at strengthening government support for persons with disabilities during disasters. The Association of People Affected by Leprosy (APAL) was represented at this important forum by Mr. Vijay Kumar, Delhi State Coordinator of APAL, who was specially invited to contribute the perspective of persons affected by leprosy.

During the proceedings, Mr. Vijay Kumar was allotted five minutes to present his views from the stage. He used this opportunity to bring national attention to the challenges faced by a large number of persons with disabilities residing in leprosy colonies (Kusth Ashrams) across India. He emphasized a critical gap in the Government of India’s disaster preparedness: the absence of a comprehensive database of persons with disabilities living in these colonies, despite multiple surveys having been conducted in the past.

Mr. Kumar also highlighted the lack of dedicated shelter homes within leprosy colonies, leaving residents particularly vulnerable during natural disasters. He advocated for the development of a national policy, led jointly by the NDMA and the Ministry of Health and Family Welfare, to systematically address the specific needs of persons with leprosy-related disabilities in disaster contexts.

Key Recommendations Presented:

Provision of ulcer dressing services and the supply of essential medical materials to all persons with leprosy-related disabilities.

Appointment of trained medical dressers in every leprosy colony to ensure regular care and support.

Construction of disaster-resilient shelter homes within all leprosy ashrams to provide safe refuge in times of emergency.

In addition to physical vulnerabilities, Mr. Kumar spoke about the social stigma and economic hardships experienced by many leprosy-affected individuals. He pointed out that family rejection and societal discrimination often force these individuals to live in extreme poverty, sometimes on the streets, without access to basic services or protection during disasters.

He issued a strong appeal to the Government of India to prioritise this highly marginalised group in all future disaster management and welfare programs. In his closing remarks, Mr. Kumar stated:

“Leprosy-affected persons with disabilities continue to be marginalised. I request the Government of India to ensure that they receive proper support and opportunities to live independent lives with dignity and equality in society.”

Conclusion

APAL’s participation in the NDMA meeting was a significant step in ensuring that the voice of leprosy-affected persons with disabilities is included in national disaster management strategies. The recommendations presented by Mr. Vijay Kumar were well-received by NDMA officials and other stakeholders. APAL will continue its advocacy efforts to ensure these crucial issues are addressed in upcoming policies and programs.

On 5^th June 2025, APAL’s State Committee in Telangana, in collaboration with local donors and well-wishers, distributed foodgrains to 23 families of persons affected by leprosy at Shanthi Nagar Colony in Peddamberpet, Telangana.

APAL extends heartfelt gratitude to the generous sponsors for their valuable support towards improving the lives of people affected by leprosy. Special thanks to Mr. Maniyada Ramesh, APAL’s State Coordinator in Telangana, for his active involvement and dedicated efforts in organising and facilitating the distribution program.

APAL’s State Committee in Bihar On 2 June 2025, a significant step was taken toward improving healthcare for leprosy-affected individuals in Purnia, Bihar, with the establishment of a permanent dressing center at Bal Krishna Leprosy Colony. This initiative, spearheaded by the Mahanaim Healing Ministry Trust, directly benefits the 45 residents from three nearby colonies: Bal Krishna Leprosy Colony, Banmankhi Leprosy Colony, and Purnia Court Station Colony. For years, these individuals had been suffering without access to basic medical care, resulting in recurring wounds and infections. The newly established center now provides regular wound cleaning, bandaging, first aid, and essential counselling services free of charge, significantly improving the quality of life for the patients. The realization of this centre was made possible through collaborative efforts from local leaders and organisations. Mr. Ramesh Prasad, State Coordinator of APAL Bihar, took the initiative to connect with Mahanaim Healing Ministry Trust, seeking support for the patients. Organisational backing was provided by Shri Bindesari Rishidev, along with grassroots support from Mr. Mohammad Tajemul, Mr. Bechan Rishidev, and Mr. Laxman Rishidev—representatives of the three leprosy colonies. Their joint advocacy ensured that the voices of the marginalised were heard, and the critical healthcare need was addressed. The dressing centre now stands as a testament to community-driven healthcare reform and compassionate intervention

“Advocacy Interaction During NHRC Visit to Danapur Leprosy Colony”

 To raise critical issues of exclusion and housing rights faced by leprosy-affected persons and advocate for their inclusion in government schemes and programs.

On 26th May 2025, the State Committee of the Association of People Affected by Leprosy (APAL) in Bihar took a significant step in advocating for the rights of persons affected by leprosy. During a visit to the Danapur Leprosy Colony by a delegation from the National Human Rights Commission (NHRC) of India, which included representatives from NLR India, the District Leprosy Prevention Officer (DLO), and other concerned officials, APAL leaders actively brought critical issues to light. The visit marked a key opportunity for the APAL State Committee to raise the voices of the community and highlight the neglect faced by leprosy-affected individuals in Bihar.

During the interaction, senior colony members, Mr. Ramesh APAL’s State Coordinator and Mr. Kamlesh, strongly conveyed their concerns to the NHRC team. One of the major issues raised was the exclusion of APAL leaders from government programs and activities coordinated by the District Leprosy Prevention Office. This lack of community participation contradicts the principles of rights-based approaches and meaningful inclusion, which are essential for the empowerment and dignity of persons affected by leprosy.

Another major concern presented to the Commission was the irregular and incomplete implementation of the Pradhan Mantri Awas Yojana (PMAY) in Bihar. Despite being eligible, many families residing in various leprosy colonies across the state have not received the benefits of the housing scheme. This deprivation has continued for years, leaving affected families in vulnerable living conditions without proper shelter. The APAL State Committee demanded immediate intervention from the authorities to ensure that the promises of central welfare schemes are fulfilled for all, without discrimination or delay. Through this engagement with the NHRC, the APAL State Committee in Bihar has reaffirmed its commitment to protecting the rights and dignity of people affected by leprosy. The Committee called for more inclusive governance and stronger accountability mechanisms, urging both state and central authorities to work closely with community leaders to address these long-standing issues.

“Tricycle Distribution Program for Leprosy-Affected Persons in Raxaul, Bihar”

 To enhance mobility and dignity of persons affected by leprosy through the distribution of 26 tricycles.

On 24^th May 2025, The APAL State Committee in Bihar, in coordination with Mr. Ramavarai Sah, Joint Secretary of APAL, has undertaken a commendable initiative to support persons affected by leprosy who are facing mobility challenges due to disabilities caused by the disease. In a recent program held at the Government Block in Raxaul, Bihar, a total of 26 tricycles were distributed to individuals living with leprosy-related disabilities. This initiative marks a significant step in empowering affected persons with better mobility and dignity in their daily lives.

APAL expresses deep gratitude to the Government of Bihar for extending its invaluable support and services to persons affected by leprosy. The distribution of mobility aids like tricycles addresses one of the most pressing challenges this marginalised community faces—physical movement and access to basic services. APAL extends special thanks to its State Committee in Bihar and to Mr. Ramavarai Sah for his rights-based approach and tireless efforts in advocating for the needs of the leprosy-affected community. His active contribution is a testament to APAL’s ongoing commitment to inclusivity, empowerment, and social justice for persons affected by leprosy.

Visit to Mother Leprosy Patient Welfare Society, Karigiri

To assess living conditions and access to healthcare and social protection for leprosy-affected residents through direct community engagement

On 15^th May 2025, Mrs. Maya Ranavare, the President of the Association of People Affected by Leprosy (APAL), along with the APAL State Committee members from Tamil Nadu, visited the Mother Leprosy Patient Welfare Society located in Karigiri, Tamil Nadu. The primary purpose of this visit was to closely observe the lives of people affected by leprosy residing in the colony, understand their daily struggles, and assess their access to essential healthcare and social protection services.

During the visit, the APAL team engaged in direct conversations with the residents of the colony. They discussed the current living conditions of the community members, their access to regular medical care, and the availability and reach of government and non-government social welfare schemes. The team carefully listened to the concerns raised by the residents and noted their pressing needs, especially in terms of healthcare infrastructure, financial support, and rehabilitation services. This interaction was part of APAL’s ongoing commitment to ensuring the dignity, inclusion, and well-being of people affected by leprosy across the country.

APAL Tamil Nadu State Committee Meeting at SIHRLC Karigiri

 To deliberate on disability pensions, social entitlements, healthcare access, and infrastructure needs for persons affected by leprosy.

On 15^th May 2025, The Association of People Affected by leprosy, APAL’s President Maya Ranavare, successfully conducted a State Committee Meeting at the Schieffelin Institute of Health – Research and Leprosy Centre (SIHRLC) in Karigiri, Tamil Nadu. This important meeting brought together key representatives of the leprosy-affected community, along with health and social development professionals, to deliberate on critical issues faced by persons affected by leprosy and their families.

During the meeting, participants engaged in meaningful discussions centered around the urgent need to increase disability pensions and improve access to various social entitlements. The committee highlighted the financial hardship many individuals continue to face due to inadequate support and advocated for stronger policies that ensure economic security and dignity for those affected.

A significant part of the conversation also focused on the enhancement of healthcare and social protection services. The members emphasized that persons affected by leprosy must have access to continuous medical care, rehabilitation, and psychological support. In addition, the committee stressed the importance of developing youth leadership within the community to ensure a sustainable and empowered future generation.

Another key issue raised was the dire need for improved infrastructure in leprosy colonies. The participants called for better housing, sanitation, and community facilities to uplift the living conditions in these settlements. Through this State Committee Meeting, APAL reaffirmed its commitment to advocating for the rights, inclusion, and well-being of all persons affected by leprosy.

”APAL Meghalaya State Committee Visit to Governor’s House”

 To advocate for increased pensions and improved welfare for persons affected by leprosy through direct engagement with state authorities.

APAL’s State Committee Visit to the Governor’s House – 15/05/2025

On the 15th of May 2025, members of the Association of Persons Affected by Leprosy (APAL) State Committee, Meghalaya, visited the Governor’s House in Shillong with the intention of meeting the Honourable Governor of Meghalaya, Shri C. H. Vijayashankar. The purpose of the visit was to personally share the challenges and hardships faced by persons affected by leprosy in the state, and to request for support and intervention in improving their living conditions—particularly in the matter of increasing the monthly pension.

Although we were unable to meet the Governor due to not having a prior appointment, we were respectfully welcomed and directed to the office of the Joint Secretary within the same premises. The Joint Secretary received us warmly and gave us the opportunity to introduce our association (APAL) and explain our mission. We spoke about the discrimination, social exclusion, and economic struggles that members of our community continue to endure.

After listening to our concerns, the Joint Secretary advised us to submit a detailed written representation of our problems and needs. He assured us that our request would be forwarded to the appropriate authorities for necessary consideration and action. We were encouraged by his understanding and willingness to support our cause. The meeting concluded on a hopeful note, with a promise of follow-up and assistance to help improve the welfare and dignity of leprosy-affected persons in Meghalaya.