India CSR is honored to present an exclusive interview with Mohd Shariq Malik, Head – of Corporate Social Responsibility, Assets Care and Reconstruction Enterprise Ltd (ACRE). We delve into the status of leprosy in India, the challenges surrounding this devastating disease, and ACRE’s significant efforts to combat it. Through this enlightening discussion, we discover how ACRE, along with other committed organizations, is positively transforming the lives of those afflicted by leprosy.
In this conversation, Malik shares his insights on the prevalence of leprosy in India, the projects ACRE has undertaken to aid those suffering from the disease, and his vision for the future. We also explore ACRE’s broader social initiatives beyond healthcare, highlighting their impact on education and skill development. Through ACRE’s determined efforts in disease control and social upliftment, the organization is making substantial strides towards a healthier, more inclusive society.
What is the status of Leprosy in India? How has it changed over the years?
Leprosy, also known as Hansen’s disease, is a mildly infectious disease caused by Mycobacterium leprae. The bacteria affect the skin, peripheral nerves, and the eyes and if left untreated can cause severe disabilities and blindness.
The transmission of Leprosy is widely thought to passed on by breathing in infected respiratory droplets. If untreated, leprosy results in sores all over your body eroding your extremities – your toes, your hands, and your feet and the leprosy infected individual, without being aware, becomes a transmitter of the disease. The disease affects some of the most vulnerable people in the world, causing life-changing disabilities and most often a lifetime of abuse, and isolation but there is a cure.
Many believe that leprosy is a thing of the past and have no idea of its continued prevalence, spread and the suffering it causes. The truth is leprosy never went away! Globally, there were 1,27,558 new leprosy cases detected in 2020-21, according to official figures from 139 countries from the 6 WHO Regions, out of which approximately 60 per cent of cases account from India. Due to fear and lack of knowledge that the disease is curable, there are still over 30 lakh people across the world living undiagnosed and every day the disease causes further damage to their being, health, livelihoods, and futures.
Collaborative, consistent efforts by the government, non-profits as well as private sector in the area of detection, treatment and rehabilitation and upscaling of healthcare workers have contributed to increased awareness over the years. However, there is still a long way that requires consistent efforts.
What according to you is the reason behind the prevalence of leprosy in India?
For those who have erased this horrific disease from their memory, leprosy patients today are not just battling with diagnosis and treatment but also fighting for their right to dignified living. Most are living as outcastes in isolation, where they become a no–name and their existence too is not acknowledged. The worst, they are also the victims of discrimination due to some appalling archaic laws.
Leprosy patients are forced out of their homes to go and live in isolation with other people suffering from this disease. The extent of stigma and discrimination is evident by the fact that there are 750 leprosy colonies in India with over 2 lakh survivors and their families residing in them. About 40 such colonies exist in Delhi NCR alone.
The stigma, unfounded beliefs and misconceptions associated with leprosy and social isolation of those affected is widely prevalent, creating bigger obstacles towards their cure and rehabilitation. Today, encountering leprosy literally closes the door to living a normal life, educational and vocational opportunities, and the person’s existence in most cases!
How are ACRE and Rotary helping the Government in controlling leprosy?
Since its inception, the Leprosy Control Project has been consistently working for improving lives of more than 1500 leprosy patients and their families in Delhi NCR. So far, ACRE and LEPRA, together with Rotary have trained more than 650 healthcare workers and conducted 63 physiotherapy camps across 30 Leprosy Colonies out of 40 in the state. The project takes a five-step approach to tackle leprosy: create awareness, training to capacitate healthcare workers, active case finding, treatment and palliative care of patients, and rehabilitation and reintegration into society in alleviating the burden of leprosy in India.
For ACRE, it is a matter of great pride to be associated with a noble cause like this and witness the impact the Leprosy Project has made in last three years. We share a common vision, value system, commitment to society and a common willingness to do better. Our long-standing partnership with Rotary Club of Delhi South and the LEPRA focuses on strengthening the existing healthcare infrastructure to diagnose, treat and rehabilitate leprosy patients.
What is the execution strategy of the Leprosy Control Project?
The objective of the project is to create a robust system to address the imminent need to control leprosy from awareness to rehabilitation and put Leprosy on the healthcare map of our country.
This 14-year project will be carried out in three phases, starting with Delhi NCR, an endemic area of leprosy patients and potential patients to create a ripple model of learning and success to then be taken PAN India. With successful implementation of the pilot in NCR, the model will become a simple ‘lift and shift’ for the rest of India. The three distinct phases of the project over the 14-year period are:
Phase 1 (4 Years) – Implementation of project in NCR of Delhi – Raise awareness of leprosy among the general public, health professionals and decision makers (after training of Medical Practitioners, Rotarians, health care staff and volunteers), Active Case finding for case detection and system for collation of data through enhanced health staff training, utilization of this data for referral to treatment, increased treatment, medication and palliative care resources and confidence building support for leprosy patients in NCR of Delhi.
Phase 2 (Next 4 years) – Implementation of the project to other Leprosy endemic areas of India like UP, Punjab, Haryana, Rajasthan, Telangana, Bihar, Jharkhand, and Himachal Pradesh.
Phase 3 (Next 6 Years) – Implementation the project PAN India to reduce the incidence of leprosy to insignificant levels.
Our aim is to make leprosy project a scalable program for PAN India implementation backed with government resources.
Briefly explain the key initiatives you have undertaken to support leprosy patients.
Several projects have been undertaken by Rotary with the support of ACRE to help leprosy patients. These initiatives include:
1. Setting up a solar panel grid in a leprosy colony to help save electricity costs and ensure that the patients always have access to electricity.
2. As deformity and disability in limbs are one of the key challenges for leprosy patients, tricycles are distributed to help with the mobility needs of the individuals.
3. Several healthcare camps are organized in leprosy colonies for the treatment and rehabilitation of patients.
4. Special MCR footwear is distributed that is gentle on the skin of patients and is more comfortable than regular footwear.
5. Dedicated vans that go from one leprosy colony to another to help with the palliative needs of the patients.
What more needs to be done to eradicate leprosy in the country?
Leprosy continues to be a public health issue with new cases being detected every year, across the globe. Stigma and discrimination are the major causes of sufferings among leprosy patients. Although, Leprosy is curable and treatment is freely available, Leprosy affected people are still ostracized and face a lot of suffering due to lack of awareness among the common citizens.
Mass awareness campaigns, policy advocacy to fight discriminatory laws and focused approaches to reduce the number of cases, addressing disabilities is required to improve the quality lives of patients in India.
What other social initiatives is ACRE helping?
ACRE is actively involved in supporting social initiatives. Currently, its contribution can be divided into three different sectors 1. Healthcare, 2. Education, and 3. Skill Development.
• In Healthcare, it supports Rotary for the leprosy control project. Further, it extends its support to Genesis Foundation, and Child Heart Foundation to support the surgeries of children below the age of 18 years with congenital heart diseases (CHD).
• For education, ACRE is supporting 400 children through NGO Parivaar, based in West Bengal and Madhya Pradesh. Here ACRE has been providing for education, food, lodging, and complete overall development of the children. Samparc, based in Lonavala is another residential campus through which ACRE is helping girl children coming from challenging backgrounds such as red-light areas with their education and overall development.
• It extends its skill development training to 20 students by giving them training in driving big vehicles such as bulldozers known as the ‘Backlog Roller Operator Program’. The students have benefitted from the training and have been able to find employment.
How many CSR grants by ACRE have been dedicated to controlling Leprosy till now?
Around 20% of the grant of the total CSR budget by ACRE is given to the leprosy control project.
How many people have benefitted from the initiative so far?
The leprosy control project has impacted over 23 out of the 38 leprosy colonies in the Delhi NCR. It has distributed over 611 self-care kits, 357 ready-made shoes, 232 custom-made shoes, 167 aids and appliances, and over 100 wheelchairs in the past year. And more is being done this year to expand the reach and support to the leprosy patients.
Are there any other future projects in the pipeline to help in Leprosy control and management?
For future opportunities, ACRE is focusing on developing a model leprosy colony and supporting more patients with their surgeries and treatment for leprosy.
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