NEWS & EVENTS

On Tuesday, the 10th of September 2024, Pasumamula J.P.H.S. hosted a significant event organized by the Children of Deccan Foundation (CDF) in partnership with Mangala as part of their girl safety program. The event primarily aimed at providing safety kits to the female students of the school and conducting an awareness program focusing on hygiene practices. The school’s principal led the awareness session, emphasizing the significance of personal hygiene and safety, particularly for young girls. The initiative sought to empower the students with crucial knowledge and resources to uphold their health and well-being.

The event was attended by a diverse group of participants, including Pooja and Diya, Coordinators of the Child Protection Program, Shri Malkanna, the Founder of CDF, Mr. Ramesh Garu, the State Coordinator of APAL in Telangana, and other prominent figures such as Vidyadan Vineeth and Amir. Their presence and active involvement highlighted the collaborative endeavor to advance the safety and welfare of girls in the community. The event not only furnished practical safety kits but also instilled a sense of awareness and responsibility among the young girls, equipping them with the knowledge necessary to safeguard themselves and make well-informed decisions regarding their hygiene practices.

On September 10, 2024, the State Committee of APAL, in partnership with the Children of Deccan Foundation, hosted a book distribution event at MPPS School in Pasumamulu as part of the Vidyadhan program. This initiative aimed to facilitate the educational advancement of female students by providing them with essential learning resources. The event garnered active involvement from the local community, including the school’s teaching staff and the students, who were the program’s primary beneficiaries.

The event was graced by Mr. Malkana, the local councillor and founder of the Children of Deccan Foundation, whose unwavering commitment to education and community service has been pivotal in realizing such initiatives. Mr. Ramesh, the State Coordinator of APAL in Telangana, played a significant role in coordinating the event, alongside Vidyadhan program coordinators Pooja and Ramesh. The presence of Vineet, Amir, and Diya, in addition to Mr. Malkana’s supporters, contributed to the collaborative atmosphere of the day, underscoring the collective endeavour to champion the education of young girls. This endeavour exemplifies APAL’s dedication to the socio-economic empowerment of marginalized communities, in line with its overarching mission to serve individuals affected by leprosy and advocate for comprehensive education.

On the 9th of September, 2024, a significant development took place to address the well-being of the inhabitants of Nirmal Kusht Colony in Bokaro, Jharkhand. In the presence of Mr. Jawaharram Paswan, the Vice President of the Association of People Affected by Leprosy (APAL), and key members of APAL’s State Committee in Jharkhand, namely Mr. Mohd. Zainuddin and Mr. Madhusudan Tiwari, a formal request was submitted to the Deputy Commissioner’s office. This petition aims to launch a housing program for Nirmal Kusht Gram to improve the living conditions of individuals afflicted by leprosy within the colony.

The residents of Nirmal Kusht Colony, backed by APAL’s leadership, are optimistic that this initiative will lay the groundwork for obtaining suitable housing and improving their standard of living. This endeavour underscores APAL’s unwavering dedication to championing the rights and requirements of individuals affected by leprosy, ensuring that they are not marginalized in the pursuit of socio-economic progress. The presence of APAL’s Vice President and State Committee members underscores the significance of this cause and the collaborative endeavour to effect positive change in the lives of the colony’s inhabitants.

In the previous month, the APAL State Committee in Andhra Pradesh conducted a health screening camp in collaboration with Kaligiri Leprosy Hospital at the New Jyothi Leprosy Colony in Nellore. During the visit, they discovered significant obstacles faced by individuals affected by leprosy, particularly in terms of accessing treatment and eye protection services. Many residents were grappling with insufficient healthcare support, elevating the risk of further health complications, including common eye-related issues among those affected by leprosy.

Recognizing the immediacy of the situation, the APAL State Committee promptly engaged with the pertinent Medical Department of the Government and the District Leprosy Officer of Nellore. They submitted a memorandum urging improved healthcare services for the colony’s residents. The Medical Department responded affirmatively, swiftly coordinating healthcare and eye care services tailored to the needs of those affected by leprosy. Furthermore, they administered BCG vaccinations to the residents, addressing a critical health requirement within the community.

The APAL State Committee, in conjunction with the residents of New Jyothi Leprosy Colony, conveyed their deep appreciation to the Medical Department of Nellore for their speedy and compassionate response. They also extended special thanks to the APAL State Committee Mr. Sayilu, Mr. Prakash and Ms. Jyothi an AASHA worker, who played a pivotal role in the initiative in the locality, making significant contributions to the success of the health camp and ongoing support for the community.

On the 5th of September 2024, the State Committee of APAL in Jharkhand, accompanied by Mr. Madhusudan Tiwari, conducted a visit to the Angarpathra Leprosy Colony and Tetulmari Leprosy Colony in Dhanbad. Mr. Tiwari actively engaged with the residents of Angarpathra Colony, holding discussions with them to comprehensively understand the challenges and issues they encounter daily. This visit served as a platform for the residents to articulate their concerns, predominantly centring around the socio-economic adversities and insufficiencies in the support structures within the colony. The significance of Mr. Tiwari’s visit lies in its demonstration of APAL’s continuing dedication to comprehending and redressing the specific requirements of leprosy-affected communities across Jharkhand.

Additionally, Mr. Tiwari made his inaugural visit to Tetulmari Leprosy Colony, where he uncovered several pressing issues encountered by the residents. In 2004-2005, 20 leprosy patients from Barambe Ranchi were relocated to Tetulmari. Subsequently, in 2008-2009, 22 houses were erected under the Indira Awas Yojana in Block – Baghmara, Tetulmari, and Dhanbad, and these were assigned to all the relocated patients, including two local leprosy patients. However, the current circumstances in the Tetulmari Leprosy Colony are dire. The residents rely entirely on a modest government pension of ₹1000 and a monthly ration of 5 kg in addition to a PH (Public Health) card. There are no other means of livelihood or supplementary support, leaving the community to exist solely on these limited provisions. The visit underscored the urgent requirement for augmented support and enhanced living conditions for the residents of Tetulmari, who persist in enduring severe hardships with nominal resources.

On the 3rd of September, the State Committee of the Association of People Affected by Leprosy (APAL) in Bihar, referred to as SAMUTHAN, convened at the office of the Land Reforms Minister in Patna to address critical land-related issues encountered by leprosy colonies in the state. The committee highlighted the significant challenges faced by residents, including insecure land ownership and inadequate living conditions. Emphasizing the urgency of intervention and policy reform, they urged the Land Reforms Minister’s office to take concrete steps to address the longstanding land problems affecting the community.

After the meeting with the Land Reforms Minister, the committee proceeded to the Social Security Office to submit an application advocating for an elevation in the disability pension for individuals affected by leprosy. They argued that the existing pension amounts are insufficient to meet the basic needs of those living with disabilities and stressed the need for an increase to ensure a more sustainable livelihood. They emphasized that augmenting the pension would significantly enhance the quality of life for individuals affected by leprosy, many of whom already face marginalization and endure social and economic hardships. The delegation expressed optimism that their efforts would yield positive changes and committed to further advocacy for the rights and welfare of leprosy-affected communities in Bihar.

APAL extends its gratitude to the APAL State Committee in Bihar for their advocacy and extends special thanks to Mr. Someswar Dubey, Mr. Kamlesh Chandra Lal, and Mr. Ramvarai Sah for their contributions to the leprosy community.

On 29^th August 2024, The President of APAL, Maya Ranavare, was invited, alongside the APAL State Committee in Maharashtra, to attend a one-day convention organized by the Maharashtra Kushthapit Sanghatna. The event aimed to honor students who received merit scholarships through the Kusthakanth Scholarship Scheme and to welcome the Honorable President of Maharashtra Kushthapit Sanghatna. Distinguished leaders and activists dedicated to the welfare of individuals affected by leprosy and those advocating for educational opportunities for underprivileged communities convened at the gathering.

The convention hosted esteemed guests including Hon. Shri Ram Naik, Governor of Uttar Pradesh, Hon. Shri Prashant Thakur, MLA of the Panvel Legislative Assembly, and Hon. Shri Manoj Bhujbal, MLA of the Nashik Graduate Constituency, Panchvati, Maharashtra, who served as Chief Guests. Hon. Shri Uday Takar and Hon. Smt. Maya Ranavare took on the roles of Chief Guest and Program Coordinator respectively. The inauguration of the event by Hon. Shri Nitin Kadam from the Education Department of Maharashtra underscored its focus on education and empowerment.

The Maharashtra Kushthapit Sanghatna, located at Shri Ramdas Thakur Samajik Vikas Mandal in Mandve, Panvel, organized the convention under the leadership of Mr. Jitendra Chatehan, President, and Shri Ashok Ambekar, Secretary.

During the session, the organizers initiated a discussion on the necessity of an amended petition to address critical issues faced by people affected by leprosy. They proposed several key demands for inclusion in the new petition:

1. National Survey: Conduct a fresh national survey of all individuals affected by leprosy across the country.

2. National Policy: Formulate a comprehensive national policy for the empowerment and upliftment of leprosy victims.

3. Uniform Subsistence Allowance: Implement a uniform and genuine subsistence allowance across all states.

4. Free Medical Facilities: Instruct all states to provide free medical facilities to all leprosy-affected communities.

5. Preservation of Rights: Ensure housing and land rights are preserved for leprosy sufferers.

6. Free Education and Special Training: Provide free education for the children of leprosy-affected persons and offer special training for competitive government examinations.

7. Amendment in Personal Laws: Introduce necessary amendments in personal laws to protect the rights of those affected by leprosy.

8. Financial Support for Economic Activities: Provide financial support for small-scale industries and agriculture involving leprosy-affected individuals.

9. Tax Exemption for Products: Exempt products made by leprosy-affected persons from VAT/GST.

10. Public Awareness Campaign: Address misconceptions and lack of awareness about leprosy through an effective public awareness campaign.

On 28^th August 2024, Under the 15th Finance Commission Scheme, a substantial renovation project took place at the Leprosy Ashram of West Khagron, Ward No. 12. The project focused on renovating the pipeline and pathways within the ashram premises and had an allocated budget of Rs. 3,07,009. Mr. Sujit Kumar, the Chairman of the Municipal Council of Khagron, in collaboration with Mrs. Chinta Devi, Councilor of Ward No. 12, oversaw the renovation. Their proactive approach and dedication resulted in significant infrastructure improvements at the ashram, creating a safer and more accessible environment for its residents.

The successful realization of this important project was made possible by the relentless efforts of Ramesh Prasad from APAL’s State Committee in Bihar. His unwavering commitment to the cause and persistent advocacy ensured that the voices of individuals affected by leprosy were heard, leading to the much-needed renovations. APAL extends its deep appreciation to Mr. Sujit Kumar and Councilor Mrs. Chinta Devi for their invaluable service and support to the leprosy-affected community and their families. Special thanks are also due to APAL’s State Committee in Bihar for their active contributions and continuous efforts in advocating for the rights and well-being of those affected by leprosy. Their collective work represents a significant step towards improving the quality of life for this marginalized community.

On 28^th August 2024, In partnership with the Schieffelin Institute of Health – Research & Leprosy Centre, Karigiri, APAL’s State Committee in Andhra Pradesh hosted a Health Screening Camp at New Jyothi Leprosy Colony in Nellore, Andhra Pradesh. This camp was tailored to provide essential health services to individuals affected by leprosy, including ulcer care, eye care, provision of aids and appliances, as well as dispensation of essential medicines. Notably, a need for the expertise of a Reconstructive Surgeon to address complications arising from leprosy was identified during the camp. The primary goal of the camp was to ensure comprehensive healthcare support for those affected by leprosy, thereby enhancing their quality of life and overall well-being.

On behalf of those impacted by leprosy, APAL expresses profound appreciation to Dr. Jerry and the dedicated team from the Schieffelin Institute for their exceptional services and unwavering commitment to the cause. Their compassionate care and medical proficiency have significantly alleviated the suffering and instilled hope among the residents of New Jyothi Leprosy Colony. Additionally, APAL extends special gratitude to Mr. Sayilu and Mr. Prakash from APAL’s State Committee for their active and invaluable contributions in organizing and coordinating the camp. Their efforts were pivotal in ensuring the success of the camp, enabling individuals affected by leprosy to receive the requisite care and support.

On August 25, 2024, the President of APAL, Maya Ranavare, alongside the management of APAL’s State Committee, held a meeting with the Governor of Odisha, Mr. Raghubar Das, at his office. During the meeting, a memorandum was presented to address a critical issue pertaining to the state’s disability pension policy.

Currently, the disability pension of 3,500 rupees is exclusively provided to individuals affected by leprosy who are over 80 years old. This policy has led to the exclusion of many individuals residing in leprosy colonies, enduring significant disabilities and challenging living conditions, who do not meet the age criteria for financial assistance. These individuals, in urgent need of support, are currently deprived of essential resources for sustainable living.

APAL respectfully appealed to the Governor to consider extending the disability pension to all individuals affected by leprosy, regardless of age, by recognizing a 40% disability certificate as the eligibility criterion. This adjustment aims to address the significant gap in the current policy and ensure that pension benefits reach those most in need, thereby providing these individuals with the means to live with dignity and security. Furthermore, the delegation raised awareness of critical land issues faced by many in the leprosy-affected community, residing in unsafe and uninhabitable housing. They urged the Governor’s intervention to address these urgent housing and land concerns, guaranteeing safe and stable living conditions for the vulnerable individuals.

The meeting was attended by Maya Ranavare (President of APAL), Jawahar Ram Paswan (Vice President of APAL), Prabhakar Sahoo (Executive Member of APAL), Biswanadh Sahoo (APAL’s State Coordinator in Odisha), and other key members. APAL expressed profound gratitude to the Governor for his positive response and the warm hospitality extended during their visit. APAL remains optimistic that these critical issues will be addressed to enhance the lives of those affected by leprosy in Odisha.