Novartis Comprehensive Leprosy Care Association (NCLCA)

Partnership objective

Provide comprehensive care (prevention and treatment of leprosy-related disabilities) for leprosy patients, train health workers and support former leprosy patients in reintegration into society.

The project team helps those with deformities reintegrate into society through disability care, including surgeries, grip aids and physiotherapy. The project team helps those with deformities reintegrate into society through disability care, including surgeries, grip aids and physiotherapy. Copyright Novartis Foundation

What are the health needs and challenges?

Leprosy and the deformities it causes have often been viewed as a punishment from God. Many societies have dealt with leprosy by isolating the mostly poor patients in colonies for fear of the disease spreading. Although India has successfully reduced its share of the global disease burden, the country still accounts for the highest absolute number of cases.

Despite improved leprosy control, some patients, mainly those with delayed diagnosis, develop irreversible disabilities requiring specific care, correction and rehabilitation. Disabilities are secondary injuries which are not well understood, and can be avoided by early diagnosis and treatment. Patients with severe hand or foot disabilities, which prevent them from living normal lives, are still frequently stigmatized.

Description of partnership activities and how they address needs and challenges

For over 25 years, the Novartis Foundation has been active in the fight against leprosy. Spreading the message that ‘leprosy can be cured,’ the foundation has played a key role in reducing the stigma attached to the disease and helping patients reintegrate into society.

The Novartis Comprehensive Leprosy Care Association (NCLCA), supported by the Novartis Foundation, aims to prevent disabilities beyond the early detection of leprosy. The project team uses disability care — including surgery, grip aids and physiotherapy — to help those with deformities reintegrate into society.

NCLCA workshops include:

  • Early detection of leprosy, mainly among children,
  • Health education for patients with insensitive limbs to prevent ?injury, burns and ulcers (which ultimately cause disabilities),
  • Instructions on how to treat wounds and ulcers with a self-care kit,
  • Physiotherapy advice to prevent deformities from worsening,
  • Provision of physical aids such as hand and foot splints to help correct disabilities, and
  • Provision of instant grip aids to enable people with advanced deformities to perform daily tasks without assistance.

Summary of impact and forward looking information

By passing knowledge on to local health workers, NCLCA reaches between 800 and 1,000 patients every year. The adoption of the NCLCA’s modalities – such as grip aids, self-care kits and health education booklets – by the Indian government has increased impact even beyond these numbers. Over the past years, nearly 28,000 self-care kits were distributed to patients through the Indian National Leprosy Eradication Program. Other countries such as Myanmar, Tanzania and Sri Lanka have also adopted tools developed by the NCLCA.

Despite these successes, leprosy control is at a critical juncture today. The disease has limited spread and thus the level of international attention and political commitment is declining. In an effort to contribute to the last mile by disseminating knowledge about leprosy among health workers, the Novartis Foundation published the eighth edition of  Leprosy – for medical practitioners and paramedical workers.

 

Videos

Leprosy in India

Partnership information

Company(ies) Novartis

Partner(s) Indian Ministry of Health, JJ Group of Hospitals

Type of Partner(s) Academia / Hospitals, Government

Therapeutic Focus Other, Neglected Tropical Diseases

Disease(s) Leprosy, Surgical Care

Program Type(s) Availability of Treatment - Product Donations, Health System Infrastructure - Training, Prevention Programs - Awareness & Outreach

Targeted Population(s) Elderly, Health professionals, Men, Patients in needs of treatment, People with low income, Women, Youth

Region(s) East Asia & Pacific, South Asia, Sub-Saharan Africa

Number of Countries 4

Country(ies) India, Myanmar, Sri Lanka, Tanzania

Start Date 1986

More information Novartis Leprosy Care

Anticipated completion date Ongoing