Claiming the Right To Health

“My heart can’t be cured is because I’m too poor to pay my son’s school tuition—and that is breaking my heart” (Korean village woman)

A slim boy hobbled on his lame leg to catch up with me. I turned to see a young face covered with dark lesions. The hot summer breeze lifted the smell of his tattered clothing into the air and followed him like a shadow. He had tattered bandages on his fingers that reminded me of Lazarus rising from the dead. A case of leprosy on two legs was heading toward me. I turned about and quickened my pace.

I wasn’t afraid of the boy. I had just spent a week at a leprosy center in Wardha, India. I knew that a leper’s casual touch never gave anyone else the disease. It took long and continual contact to transmit the disease. Then why did I instinctively turn away? I think it was the instinct to avoid any street beggar.

I thought that I’d hurry along to finish my errands. In New Delhi, if you start giving coins to a street beggar, you become surrounded by more. It was better to not get involved. My eyes spotted a taxi nearby. The boy called out in Hindi as if he had an emergency; he became more and more agitated. I worried that his keepers would beat him if he didn’t bring in money, so I stopped. When he reached me, he smiled and extended his thin arm to hand me something. It was my pen that I had dropped on the ground. Before I could thank him, he went off to join the lepers’ huddle against a dirt wall.

There was no medical reason this child should have had leprosy. The disease is curable. With the help of the World Health Organization, a treatment known as multidrug therapy (MDT) has reduced leprosy incidence by 85 percent. The achievement is not as well-heralded as it ought to be. If infected individuals go to a health clinic when they first notice the skin spots, they can be cured with MDT within six months. After the first dose, they are no longer infectious and can mingle in close contact with their family and friends. Early detection has probably prevented about one to two million people from becoming disabled. MDT is a miracle drug this boy should have had.

However, stigma and deformity have made access to MDT impossible. Many children do not have enough sensation in their limbs to avoid accidents that can lead to losing fingers and hands, such as burns. At the Wardha Center, founded by Mahatma Gandhi, artificial hands and legs were fashioned to help leprosy patients with their rehabilitation. With the help of education programs about the affliction in local communities, leprosy patients can marry and raise families. Their children do not inherit the disease. In some Indian areas where social awareness has been raised, leprosy patients have gotten jobs and have become productive members of their community.

Biomedical research has done its job by finding the miracle cure, but there is more work to be done. Continuing stigma prevents some doctors from specializing in leprosy, if not even learning about the disease. As a result, we have reached an impasse. MDT could help us eradicate the pockets of endemic leprosy in India, Nepal, and about 20 other countries. However, we must first decide that helping children with leprosy is a priority.

I lost the old pen. However, the boy gave me a very special gift to last a lifetime: a glimpse into a child’s innocence is as pure as their beginnings. His small gesture of forgiveness for my misunderstanding showed compassion beyond his years. Why is it so difficult for us to show that we care in return?