COVID Support for Leprosy Communities: India (SKSS)

Activity area:

Through our grant programs, Sasakawa Health Foundation is working to realize a world free from all forms of suffering associated with leprosy, or Hansen’s disease.

In 2020, a year defined by the coronavirus pandemic, life became tougher for communities of persons affected by leprosy and their families. Therefore, in addition to our existing grant programs, we added a COVID support program based on 1) responding to direct needs, 2) advocacy with the government, and 3) actively disseminating information.

Our sixth report is from India.

India continues to account for more than half of all new cases of leprosy reported worldwide each year. In addition, the problem of stigma and discrimination remains deep-rooted and more than 100 laws that discriminate on the grounds of leprosy still exist at the national level.

When the coronavirus pandemic began, India was hard hit. During the first wave of the virus, when we invited applications for this project, more than 80,000 infections a day were being reported and a strict lockdown was having a huge impact on daily life.

The situation was especially tough for socially and economically vulnerable communities of persons affected by leprosy, many of whom lost their livelihoods as a result. Restrictions on movement also meant that leprosy patients and those living with the disease’s after effects found it difficult to access treatment, threatening a further deterioration in their quality of life.

Against this backdrop, we implemented a program of support in Maharashtra State in west central India between November 2020 and February 2021. The beneficiary was Saksham Kushtanty Swabhimani Sanstha (SKSS), an organization of persons affected by leprosy founded as an NGO in 2019 in Chandrapur and Gadchiroli districts of the state.

With the aim of realizing an inclusive society in which leprosy is no longer a feared disease, SKSS’s activities include awareness-raising, counselling and advocacy. For this project, SKSS was partnered by ALERT-INDIA, which for the past 40 years has been working to improve the lives of persons affected by leprosy living in urban and rural areas of Maharashtra.

The first step involved selecting 20 volunteers from among persons affected by leprosy to gather basic information about their community and survey the impact of the coronavirus pandemic in order to determine who should receive emergency assistance. Based on the results, 14 people were provided with cash (INR 5,000-11,000 each) to rebuild their livelihoods, and 50 people were provided with cash (INR 1,500 each) to purchase groceries and daily necessities. The 14 people who received livelihood support invested the money in existing or new businesses, and were able to turn a small profit and make a living amid the pandemic.

In addition, SKSS held self-care promotion camps for persons affected by leprosy living with chronic ulcers and other sequelae to practice self-care at home. Using teaching aids, volunteers demonstrated the correct way to practice self-care. Of 122 people with advanced ulcers who took part in the camps, 57 showed signs of improvement.

A self-care promotion camp (December 2020)

The project ran smoothly and achieved concrete outcomes, thanks to the detailed plans drawn up and implemented by SKSS and ALERT-INDIA. However, with India subjected to a second wave of the coronavirus from around March 2021 with the spread of the more contagious Delta variant, there was an explosive spread of infections and people’s daily lives were again placed under strain. Consequently, we launched a second round of support for SKSS to carry out activities assisted by its partner ALERT-INDIA.

After peaking in early May, the number of coronavirus cases in India is on the decline, but as of September 2021 the country is still reporting around 40,000 new infections daily and the situation will take some time to be resolved. For the foreseeable future, therefore, SKSS members, who have been central to this project, will continue to have an active role to play.