It was toward the end of my day at the Leprosy Mission Hospital in Delhi, India. I was sitting with one of the patients, Ram (name changed), in the physical therapy room as he massaged oil into his hands. Rhythmically he rubbed the slick oil over his knuckles, trying to prevent or forestall muscle damage. Also with us was an English-speaking physician who was translating for me. “He is very depressed,” she informed me.
With the physician’s help, Ram told me he was starting to feel numbness in his hands – one of the early signs of nerve damage from leprosy. He was worried because he supported his family through his job as a rickshaw puller, and the loss of his hands would be devastating both emotionally and financially. “What would you want to do if you couldn’t pull a rickshaw?” I asked him. He thought he’d like to sell vegetables but wasn’t sure how to go about changing professions. Later, I would meet his wife – a small woman in a brightly colored sari who came to visit him at the hospital every day. Spending time with them and the other patients at the hospital opened my eyes up to the reality of modern day leprosy patients.
Ram is one of thousands of people with leprosy living in India. In the U.S., however, many people are unaware that leprosy even exists in the modern world. “I thought that leprosy was something exclusive to the Middle Ages!” exclaimed one friend when I told her that I was working with patients with the disease.
For those who don’t know, leprosy is a chronic disease caused by Mycobacterium leprae (a mycobacteria is a kind of bacteria). The disease affects the skin, nerves (especially the peripheral nerves – nerves that go to places like hands and feet), as well as the lining of the upper respiratory tract and the eyes. It is spread through respiratory droplets (from the nose and mouth) via prolonged and frequent contact and is NOT highly contagious.
What most people also don’t know about leprosy is that is it completely curable with multidrug therapy (MDT). This treatment is completely free to all patients across the world through the World Health Organization. However, without treatment or even despite treatment, many patients suffer irreversible damage to their skin, nerves and eyes – leading to disfigurement, muscle wasting, paralysis and blindness. Additionally, there is still significant stigma for patients – leading to psychological distress, marginalization and discrimination. Many countries still have outdated laws from the 1800s which, for example, list leprosy as grounds for divorce or forbid persons with leprosy from running for office or obtaining a driver’s license -even after they have been treated and cured.
There is some cause for celebration as there have been great gains in eliminating leprosy. Almost 16 million people have been cured of leprosy using MDT in the past 30 years. And more than 10 million of those never developed visible deformity.
But that does not mean that leprosy is gone. Far from it, actually. In 2012 there were 232,850 new cases of leprosy reported, with 94 percent of these cases restricted to 15 endemic countries (almost exclusively in South-East Asia and Africa). This represents an increase of more than 6,000 cases since 2011. Additionally, the number of people with leprosy who sought treatment only once they’d already developed visible deformities increased from 13,079 in 2011 to 14,409 in 2012.
Last week, I attended the International Leprosy Summit in Bangkok, Thailand. There, health ministers and high-ranking government officials from eight leprosy endemic countries came together to reaffirm their commitment to working towards the ultimate goal: a leprosy-free world.
Hayley Goldbach is the 2013-2014 Stanford-NBC News Fellow in Media and Global Health. She graduated from Brown University and recently completed her third year of medical school at the University of Pennsylvania. Hayley has lived and worked in Malawi, Botswana and India doing research and work in malnutrition, HIV-related dermatology and public health.
Previously: All in the family: Uncovering the genetic history of the world’s most lethal pathogens and Tropical disease treatments need more randomized, controlled trials, say Stanford researchers
Photo, of plaster of paris prosthetic legs for leprosy patients, by Hayley Goldbach