9 July 2018 · Global Partnership for Zero Leprosy

Lessons from the field in Bihar, India

Courtenay Dusenbury, Secretariat Director of the Global Partnership for Zero Leprosy, recently traveled to Bihar, India. In this article, she shares her observations of how the region is making progress despite challenging circumstances. The expertise of local partners, such as the professionals in Bihar, will be major contributors to the Global Partnership for Zero Leprosy’s work.

The most important lesson I have learned since becoming the Secretariat Director is that people working to prevent, detect and treat leprosy and its complications, and those affected by the disease, are a very close-knit, unique and special group. Everyone working in or affected by leprosy shares several powerful traits: humility, compassion and a genuine sense of purpose. This community wants to end the disease, and its complications, in our lifetime.

During a recent trip to Bihar, India, I met dozens of clinicians, community health workers, government officials and ILEP team members who had dedicated their careers to ending the disease. Working long hours in sometimes difficult conditions, these committed professionals are making headway in one of the world’s most challenging environments. Bihar’s land mass is larger than many European countries. With a population of close to 105 million persons, it has more citizens than all but 11 countries. More than 10% of world’s total diagnoses of leprosy are made here each year. In some areas, the basic public health infrastructure to support leprosy surveillance, case detection, contact tracing, reference laboratory case confirmation and patient care and follow-up has critical gaps. Bihar’s punishing climate (extreme heat in the summer, flooding in the rainy season and cool temperatures in the winter), high percentage of persons living in poverty, and low literacy rates add additional barriers to prevention and treatment.

Yet within this region, and the rest of India, steady progress in leprosy case detection and control, self-care and rehabilitation, and stigma reduction is being made. At the central level, new investments, case detection campaigns, training and anti-stigma initiatives put in place by Dr. Anil Kumar, Deputy Director General (Leprosy) of the Ministry of Health and Family Welfare, are producing results. In Bihar, a partnership between ILEP members, persons affected and the Bihar leprosy programme, led by Dr. Bijoy Pandey, is working in a systematic and coordinated way to measurably improve the quality of life for persons affected by leprosy.

The expertise and experience of governments and their partners at the national and local levels—and the lessons learned and best practices developed—will be major contributors to the Global Partnership for Zero Leprosy’s (GPZL) work.  Indeed, many of the questions being discussed in Bihar have direct ramifications for the GPZL working groups including:

• What are the most cost-effective ways to provide self-care, rehabilitation and surgical interventions to all who need them?  How can these programs be scaled up?
• What further study is needed to better understand barriers to access to diagnosis and treatment for women and marginalized populations; how do social and cultural norms around gender and class impact care-seeking and diagnosis?
• What are ways to track and measure patient compliance?
• How can we plan for human resources at a time when many senior leprosy experts are retiring and their knowledge is being lost?
• What type of training and feedback, and at what levels, will result in the greatest impact within the health and public health care sectors?
• How can knowledge among local healers and those working in the private health care system be strengthened?   
• What are the potential impacts of mapping and active case detection campaigns for hot spots?
• What are best practices for policies on disability, including pensions, economic and educational opportunities and integration?

One week in Bihar was not nearly enough to begin to understand the myriad issues of this complex disease. It was however, enough time to get a glimpse of what success for the GPZL would look like.

During a meeting hosted by members of the Ram Nagar leprosy colony in an urban Patna community, many of whom are leading the fight for disability benefits and policies that promote integration and economic opportunity, the older leaders were surrounded by bright young men and women in school uniforms. Each was proudly introduced and their academic marks and future plans for university shared.

Things are changing—getting better—for this community. “These young people are the path forward,” we were told.

“A few years ago nobody would have entered this place or sat in our chairs,” the leader, Someshwar Dubey, said. “Now we can point proudly to these young people, and we are sitting together and shaking hands.” Gesturing proudly to the assembled students and community leaders, he said, “My vision is that soon there will be a time when none of us will need to worry about the disease and we will be fully accepted by and integrated into the society.”

That vision is one that the leadership and members of the Global Partnership for Zero Leprosy share.  With optimism, persistence and collaboration we will make it a reality.