NEWS & EVENTS

On 4^th to 6^th July 2025, APAL (Association of People Affected by Leprosy) actively participated in the Global Forum held in Bali, Indonesia, representing the voices and concerns of individuals and communities affected by leprosy across Asia. During the forum, APAL presented two important need assessments that were developed through direct engagement with its grassroots networks. Need Assessment 1 focused on identifying the urgent and long-term needs of individuals affected by leprosy. It highlighted critical issues such as access to healthcare, stigma and discrimination, lack of livelihood opportunities, and the need for inclusive and dignified social protection mechanisms.

In addition, Need Assessment 2 addressed the specific challenges faced by community-based organizations that are led by people affected by leprosy. This assessment emphasized the necessity of sustained financial support, technical capacity building, and meaningful inclusion in policy-making spaces. APAL underscored how these organizations play a vital role in advocacy, service delivery, and peer support — yet often operate with limited resources and recognition.

Throughout the forum, APAL made active contributions to the group discussions and shared real-world experiences from its extensive community network. Its representatives provided strong and practical inputs to the drafting of the forum’s recommendations. APAL also reaffirmed its commitment to working in solidarity with people affected by leprosy and their families, thereby underscoring its mission to promote dignity, rights, and equal participation at all levels of society. The forum served as an important platform for APAL to amplify the voices of those who are too often unheard, ensuring that their perspectives shape the global leprosy agenda.

APAL conveys our gratitude to the Sasakawa Health Foundation for the great opportunity to participate in the global forum and the International Leprosy Congress.

The President of the Association of People Affected by Leprosy (APAL), Maya Ranavare, participated in the ILEP and Advisory Members Panel Meeting held in Bali, Indonesia. This significant gathering brought together global stakeholders to discuss strategies for advancing the rights, dignity, and inclusion of people affected by leprosy. As a respected leader and voice of the leprosy-affected community in India, Ms. Ranavare contributed valuable insights based on APAL’s grassroots experiences and advocacy efforts. Her presence underscored the importance of including lived experiences in shaping global policies and programs that directly impact affected individuals and communities.

During the meeting, an important focus was placed on the advocacy services provided to people affected by leprosy worldwide. These discussions explored how effective advocacy not only raises awareness but also ensures that governments and institutions are held accountable for delivering health, social, and legal services in a non-discriminatory and rights-based manner. Maya Ranavare emphasized the need for inclusive and sustained engagement with affected communities at all levels, particularly in decision-making spaces. She also highlighted APAL’s continued commitment to amplifying the voices of those who remain marginalized due to leprosy-related stigma.

A key moment of the meeting was the participation of Ms. Beatriz Miranda-Galarza, the United Nations Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members. Ms. Miranda-Galarza shared her ongoing efforts to address structural and systemic discrimination on an international scale, including her collaborations with civil society and affected persons. Her presence brought renewed attention to the need for legal reform, awareness, and accountability to eradicate stigma. Maya Ranavare and others are expressed gratitude for Ms. Miranda-Galarza’s work and called for continued solidarity and international support to advance the rights and welfare of those affected by leprosy globally.

Joint Site Verification Report: APAL & State Committee Visit – Delhi

As part of its continued commitment to the dignity and rights of persons affected by leprosy, the Association of People Affected by Leprosy (APAL), along with the APAL State Committee, conducted a joint site verification visit to two colonies in Delhi: Lok Mata Kushtha Ashram in Anand Parvat and Shalimar Leprosy Colony. This visit, led by APAL Vice President Shri Jawaharlal Ram Paswan, APAL Jharkhand State Leader Shri Madhusudan Tiwari, and local guide Shri Arjun Ram, aimed to assess the living conditions, infrastructural gaps, and urgent needs of the residents.

1. Lok Mata Kushtha Ashram, Anand Parvat

Inspection Date: 16 June 2025

Total Families: 43

Land Ownership: Delhi Development Authority (DDA)

Colony Pradhan: Mrs. Jaya Reddy

The inspection revealed critical issues affecting the well-being of residents. The colony was found to be submerged in rainwater, with water stagnating inside homes and toilets—creating serious sanitation and health risks. Drinking water was found to be impure, increasing the vulnerability of already at-risk residents. Moreover, 10 families have been unjustly removed from the official house list, causing deep distress and exclusion from housing benefits.

This flooding and health hazard occur repeatedly every year, yet the colony remains neglected. APAL recommends a permanent drainage system, reinstatement of the 10 excluded families, elevation of water pipelines, and inclusion of the colony in the PMAY housing scheme to ensure long-term relief.

2. Shalimar Kushtha Colony

Inspection Date: 19 June 2025

Total Families: 10 (including 4 leprosy-affected families)

Land Ownership: DDA

The second visit to Shalimar Leprosy Colony exposed an even more alarming situation. The colony comprises kutcha houses with no drainage, no toilets, and a critical shortage of water, especially during summer. The families are completely deprived of all government schemes, and social tension prevails due to the cohabitation of leprosy-affected and non-affected families under the same roof.

The colony head expressed helplessness:

“We are facing many difficulties here, but no solution is being found.”

Given the small size of the colony and the lack of facilities, APAL strongly recommends relocating these 10 families to a nearby, better-equipped colony. This would ensure access to basic services and government schemes. A rehabilitation plan should be developed by DDA/NDMC, with APAL involved in monitoring the relocation and dialogue process to protect the rights and dignity of the residents.

Conclusion:

The conditions in both colonies reflect a serious denial of basic human rights, social dignity, and essential public services for persons affected by leprosy. These long-standing problems have remained unresolved for years. APAL India strongly urges the relevant departments, particularly DDA and NDMC, to take immediate and coordinated action to address the needsof these vulnerable communities.

APAL’s advocacy in Bihar and the recent government action:

APAL’s State Committee in Bihar has consistently stepped up its intervention at both block and state levels. A prime example is its proactive push in early 2024, when the committee formally petitioned authorities on behalf of leprosy-affected individuals in Motihari Colony whose disability pensions had been discontinued

This action, led by activist Mr. Ramavarai Sah, ensured the reinstatement of pensions and showcased APAL’s strategic use of direct engagement with government officials.

Beyond individual cases, APAL has engaged in extensive advocacy across leprosy colonies. On 13 March 2024, the State Committee’s delegation visited Banmankhi Colony in Purnia to highlight dire living conditions: families dwelling in plastic-sheet huts on land without legal tenure

They submitted memoranda calling on authorities to secure land rights, urging remedial action to stabilize housing and support among colony residents.

In May and June 2025, supported by APAL India’s national team, the Bihar Committee intensified its advocacy activities. On 2 June 2025, APAL’s Bihar State Committee engaged with officials in Purnia to push for enhanced healthcare and social entitlement access for those in leprosy colonies

Then on 26 May 2025, they held a high-level advocacy meeting—with senior leaders present—to press the state government on disability pension entitlement issues

These efforts ultimately yielded tangible results: Bihar’s Social Security Pension Scheme was officially revised, boosting monthly pension—previously ₹400—for persons with disabilities (including those affected by leprosy) to ₹1,100. The new rate, set to take effect from 1 July 2025, was announced by Chief Minister Nitish Kumar ahead of the upcoming state elections.

Medical Support and Relief Distribution Drive at Shanthinagar and Santhoshnagar Leprosy Colonies,

On 26th June 2025, APAL’s State Committee in Telangana, in collaboration with the Hill of Hope Foundation, organized a vital outreach program in Shanthinagar Leprosy Colony and Santhoshnagar Leprosy Colony. This collaborative initiative focused on extending medical support and supplies to 150 persons affected by leprosy, who live in marginalized and underserved conditions.

The APAL State Committee facilitated the coordination between the community members and the Foundation, ensuring that the materials reached those most in need. The supplies included basic medicines, wound care kits, protective footwear, and hygiene items specifically designed to aid in the long-term care of people with leprosy-related disabilities. This effort reflects APAL’s ongoing commitment to health equity and dignity for persons affected by leprosy. Through such partnerships, the organisation continues to strengthen its grassroots presence.

APAL’s State Committee in Telangana on the on-site UDID distribution event at SRH, Kukatpally:

On June 22, 2025, under the initiative of APAL’s State Committee in Telangana, Maniyada Ramesh, APAL’s State Coordinator a dedicated camp was organized at Sivananda Rehabilitation Home (SRH), Kukatpally. During this event, 72 individuals affected by leprosy received their Unique Disability ID (UDID) cards on the spot. The fully inclusive camp covered enrollment, card generation, and handover, ensuring that beneficiaries obtained this critical government-issued documentation directly, without having to navigate external bureaucratic processes.

Empowering Through Identity Documentation

The UDID card serves as a universal, officially recognised disability certificate under the Rights of Persons with Disabilities (RPwD) Act, 2016. Replacing older certification formats, it holds nationwide validity and standardises identification, affirming each individual’s dignity and rights.

Facilitating Access to Welfare Benefits

A central aim of the event was to facilitate access to essential welfare schemes. Once equipped with a UDID card, recipients can more efficiently claim government aid such as pensions, travel concessions, healthcare subsidies, assistive devices, and educational or vocational support. Eliminating bureaucratic delays empowers beneficiaries to access services seamlessly, boosting healthcare access, social inclusion, and livelihood prospects.

Projected Long-term Impact

With 72 individuals now equipped with official identification, the event marks a powerful stride toward dignity, empowerment, and equality. The UDID cards are more than documents—they are tools that help reduce stigma, promote independence, and foster equity. Over time, these cards will serve as gateways to services and full societal integration.

APAL Bihar Team’s Advocacy Meeting with Deputy Chief Minister of Bihar

To submit a request for the implementation of a leprosy pension scheme and advocate for financial support and dignity for persons affected by leprosy.

On 18th June 2025, APAL’s State Committee in Bihar, a dedicated team, met with Mr. Samrat Choudhary, the Deputy Chief Minister of Bihar, to bring attention to the pressing needs of persons affected by leprosy in the state. During the meeting, the team formally submitted an application requesting the provision of a leprosy pension, aimed at ensuring a basic level of financial support and dignity for those who have long been marginalized and continue to face socioeconomic hardships due to the disease.

Mr. Choudhary listened attentively to the team’s appeal and expressed genuine concern about the issues raised. He acknowledged the importance of the matter and assured the team that he would personally review the request. His response gave a sense of hope and commitment toward addressing the needs of leprosy-affected individuals in Bihar. The APAL Bihar team remains optimistic that the state government will take necessary and timely action to implement the leprosy pension scheme, marking a significant step toward inclusion, support, and justice for the affected community.

Meeting with State Leprosy Officer, Maharashtra: Addressing Health Challenges Faced by Persons Affected by Leprosy

The State Committee of the Association of People Affected by Leprosy in Maharashtra recently held a crucial meeting with Dr. Ramji Adikekar, the State Leprosy Officer (SLO) of Maharashtra. The purpose of the meeting was to discuss the ongoing health issues encountered by persons affected by leprosy in the state and to collaboratively explore viable solutions to improve their overall well-being.

During the meeting, the APAL representatives shared ground-level realities, including gaps in timely diagnosis, irregular supply of Multi-Drug Therapy (MDT), lack of follow-up care for leprosy-related complications, and the need for increased awareness at both community and health provider levels. The team also emphasized the challenges faced by elderly PALs, including disability care, access to reconstructive surgeries, and long-term rehabilitation support.

Dr. Adikekar appreciated the concerns raised by APAL and acknowledged the need for a strengthened and more inclusive health response. He assured the team that the health department would take steps to ensure a regular supply of medicines, improve coordination with local health centers, and organize special camps for disability management and ulcer care in high-burden areas. He also expressed support for community-based awareness campaigns and collaboration with PAL-led organizations to ensure that the voices of affected individuals are central to program planning.

This meeting marked a positive step toward better state-level coordination and highlighted the importance of continuous dialogue between government health officials and affected communities to effectively address leprosy-related health issues in Maharashtra.

On 15^th June 2025, The APAL State Committee of Maharashtra, in collaboration with the Maharashtra Kusta PD Sanghatna Karyakarini team, convened a review meeting to assess ongoing activities and strengthen future strategies. The session focused on evaluating the progress made in advocacy, community engagement, and service delivery to persons affected by leprosy. The meeting also highlighted the importance of streamlining coordination between APAL and the local grassroots structures to improve outreach and support mechanisms.

The team exploring how visual tools and creative media could be effectively used for awareness campaigns, stigma reduction, and training materials. Looking ahead, the Maharashtra State Committee and the Kusta PD Sanghatna team committed to expanding digital outreach, strengthening grassroots leadership, and initiating new community-based programs tailored to the needs of persons affected by leprosy. This forward-looking approach underlines their dedication to inclusion, dignity, and rights-based development.

APAL Tamil Nadu Visit to Karnai Nagar Leprosy Colony,To assess living conditions and advocate for disability pensions and sanitation facilities for leprosy-affected residents.

On 14^th May 2025, APAL, along with its Tamil Nadu State Committee, conducted a visit to Karnai Nagar Leprosy Colony in Karigiri, Tamil Nadu. The visit was led by Ms. Maya Ranavare, President of APAL, accompanied by Mr. Govind Swamy, Executive Member, and Mr. Rajendran, the State Coordinator for Tamil Nadu.

During their interaction with the residents, the team assessed the current living conditions, including access to healthcare facilities, social entitlements such as pensions, and the overall infrastructure of the colony. One of the key concerns raised by the residents was the lack of disability pensions and the urgent need for toilets for the 46 houses, as well as sufficient common sanitation facilities. Taking serious note of these issues, APAL assured the community that they would work closely with relevant authorities to resolve the problems at the earliest, reaffirming their commitment to improving the quality of life for people affected by leprosy.