In the global health community there is so much focus on death–deaths caused by a disease, deaths averted by an intervention, deaths prevented through programming–that we often forget that over a billion people continue to live each day with disability from infection, injury, and illness. At the Global Network, we frequently talk about the burden of NTDs in terms of DALYs, or disability-adjusted life years–years of potential life lost due to premature mortality and the years of productive life lost due to disability–because while NTDs do not frequently kill those infected, they are horrifically disabling.
Today, on the UN-designated International Day of Persons with Disabilities, we want to share a few stories of NTDs’ disabling impact, as a reminder that death is only part of the global health story. Just as importantly, though, we want so share the good news–that in each of these cases, treatment is widely available and incredibly inexpensive.
Anjani: As she collected drinking water alongside other children on the banks of a river in southern Nigeria, Ajani had no idea that the water running through her village bred flies that would infect her with a disfiguring and disabling condition. By the age of six, Ajani had contracted onchocerciasis. This disease, commonly called river blindness, infects 37 million of the world’s most vulnerable people and causes partial and often complete blindness, oozing infections of the eyes, and immeasurable itching and pain. People in this part of Africa say ‘the river eats your eyes;’ in some communities, nearly 15% of the population is blind, with as many as 40% of adults visually impaired, robbing many of their livelihoods and condemning entire communities to a continued cycle of poverty and disease.
- The good news: Within just four years of receiving her first annual treatment (donated by Merck & Co.), her skin was completely cleared of lesions. Her husband came back, pleading with his father-in-law for her return. Today, villagers from surrounding communities seek Ajani out, eager to learn how her beautiful skin was miraculously restored. Best of all, Ajani’s village requested that she become the local distributor for Mectizan, elevating her status, helping her deliver essential aid to the community, and transforming her into a valued spokeswoman for change.
Raja: Raja was only six years old when he began suffering from recurring bouts of fever, alarming leg swelling, and pain. Unable to hide the grotesque distortions on his tiny body caused by lymphatic filariasis (LF), he had to wear short pants, prompting teasing from his schoolmates. His poor, rural Indian family could not hire a vehicle to take him to the nearest hospital, forcing Raja to make the painfully long round-trip on dirt roads, dragging his enlarged leg slowly behind him. At a very young age Raja dropped out of school, relinquishing an education that could have helped lift his family members – who, together, were living on roughly $15 a month – out of poverty.
- The good news: In 1997 the World Health Organization created the Global Programme to Eliminate Lymphatic Filariasis, with a strategy designed to eradicate the disease via mass drug administration–treating large portions of the population in order to break the cycle of transmission. To support these global efforts, GlaxoSmithKline and Merck & Co. pledged long-term drug donations of unprecedented size. Over the ensuing decade, more than two billion treatments were safely administered, and, in 2007 alone, 546 million people were treated to prevent transmission of LF.
Felix: Felix, a ten-year-old boy in Rwanda, looked no older than six–the first of many clues that indicated he was infected with an NTD. At school, Felix’s teacher noticed he was extremely lethargic and was complaining of abdominal pain. His growth was clearly stunted, and his abdomen was very distended. Felix’s teacher had been trained to recognize these symptoms of infection with intestinal worms and schistosomiasis (snail fever), and so he immediately brought Felix to a local healthcare clinic.
- The good news: Felix was fortunate enough to receive medical attention and treatment. He was given a dose of praziquantel to help treat his infections, and immediately showed signs of improvement. Within weeks, Felix was again able to focus on his school work and to play with his friends, free from physical pain. Just as importantly, as the size of his abdomen grew smaller, he was able to interact with his community free from social stigmatization.
