The Cutting Edge An Evidence-Led Approach

In this issue of Lepra News, we look at three of Lepra’s current research projects, which are helping to improve the quality of care for vulnerable communities in India, Bangladesh and beyond.

Throughout our 99 year history, Lepra have been at the forefront of research into new and innovative approaches to the detection, treatment and support for people affected by leprosy.

As an NGO dedicated to neglected tropical diseases (NTDs), Lepra is proud to be part of a family of specialist partner NGOs, dedicated to providing holistic care for some of the world’s most vulnerable communities. Under the banner of the International Federation of Anti-Leprosy Associations (ILEP), Lepra and partner NGOs are bringing together expertise in research and person-centred care to simultaneously enhance services and create evidence on what works best in community care

Current research methods and programme design, places great important ethical consideration, but also leads to the development of programmes and practices which are more sustainable in the long-term.

In this spirit, Lepra and our partners at Canadian charity Effect Hope and German charity GLRA (German Leprosy & TB Relief Association) are embarking on a new research project in 2023 called UPLIFT – ‘Unlocking the Potential of Leprosy & NTD affected people, to pursue Inclusive, Fulfilling and Transformational lives, through a harmonized Community Based Group model’.

Over a three-year period, the partnership aims to undertake a detailed study of the function of community-based organisations, focusing on India, Bangladesh and Ethiopia. Together we will try to identify what kind of communitybased groups prosper the most,

With 1-in-2 people affected by neglected tropical diseases experiencing moderate to severe anxiety or depression, UPLIFT will introduce peer counselling to half of the community-based organisations, chosen at random. This will give our mental health intervention a scientific base when measuring its added impact on health-seeking behaviour and, downstream, on physical and psycho-social outcomes.

The overall aim of the study is to develop a best-practice model for community-based groups and self-care in the widest sense. Once formed on bestpractice principles, they can be adapted to different contexts, and implemented in any community affected by neglected tropical diseases, anywhere.

This will ultimately give hope for an engaged, self-sufficient community with a lasting impact

Real Life Story

SAMARTH Project, India

ommencing in 2022, the first phase of the SAMARTH research project has been working in 3 endemic districts of Madhya Pradesh, India. Funded by Lepra and Effect , the project will assess the efficacy of a range of community-led therapeutic interventions such as mindfulness, peer counselling and other self-support group activities. The project will help to inform best practice in the support of positive for people affected

One such person to benefit from the SAMARTH project is Ms Priti Pal, a 17 year old from Manuriya village, Madhya Pradesh.

From a household of 7, Priti and her family are migrant labourers, reliant on finding temporary, low paid work Health inequalities for vulnerable groups such as migrant workers can mean that many people can struggle to receive the care they need in time to prevent disabilities.

Priti first noticed symptoms 5 years before she was contacted by Lepra’s SAMARTH coordinator in August 2022. A lack of early treatment resulted in disabilities forming in her fingers and hands. Through fear and prejudice, she had become introverted, refusing to leave the family home and was clearly struggling with the emotional impact of her condition.

Lepra arranged for staff from the hospital’s leprosy department to visit her at home, where she was diagnosed and started immediate treatment with multidrug therapy (MDT).

To help Priti overcome the emotional impact of leprosy, SAMARATH arranged for ongoing personalised care from the project staff and close support from an ASHA (Accredited Social Health Activist), a trained volunteer from her local community who helped Priti access her local selfsupport group, which has been key to helping her regain confidence and find new hope for the future.

Through the support of the project, Priti is now making a great recovery, both physically and mentally. She is also receiving disability financial support from the government which is helping her overcome the socio-economic impact of her diagnosis, and allowing her to focus on a full recovery, and a brighter future.