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Kala-azar - the Destroyer of Hope
American and Indian doctors and scientists are working to make a drug available cheaply for victims of the world's third deadliest disease.
The tribal hamlet of Jamalpur Musahari, about eight kilometers from Hajipur in Bihar, resembles an island where outsiders dread stepping ashore. Lying drunk a few yards from his dilapidated shanty, Sinesar Manjhi is trying to shut his eyes from the unfolding reality. Outside his hutment, his ailing children-two sons and a daughter-stare vacantly at passersby.
The children have been suffering from persistent high fever for several months and have enlarged spleens, manifestations of the dreaded kala-azar or visceral leishmaniasis. In Urdu, "kala-azar" means "black sickness." If left untreated, the parasitic disease is nearly always fatal. It is spread by the bite of an infected sand fly, a tiny insect about one-third the size of a typical mosquito. More than 90 percent of the world's cases of kala-azar are found in India, Bangladesh, Nepal, Sudan and Brazil.
"Twenty people have succumbed to the disease and another 50 have been taken seriously ill in this hamlet alone," says Gita Devi, who scouts affected villages with her husband, social activist Sudheer Kumar Akela, to provide help to the sick and needy.
After years of assisting villagers with information and funeral services, the couple's frustration is slowly building. "Manjhi's wife, two daughters, a sister, brother-in-law, nephew, niece, brother, sister-in-law and two more nieces have already been devoured by kala-azar. There is little hope for the others. How many people can we help?" Devi asks.
The tragedy is repeating itself at the house of Jalandhar Ram, who emptied his savings account to get his wife treated, but in vain. Ram is now counting the breaths of his two children, who hang precariously between life and death.
Dante's words, "I did not die, but nothing much of life remains," stand so glaringly true here.
"Whatever I had was spent on the treatment of my wife. I am left with nothing to put at stake for my children, and who knows whether they'll live to see the next dawn?" Ram laments. He has related his entire ordeal in a single breath as his moist eyes remain despondently fixed on his son, Bhutto, and daughter, Pinkoo, resting on a broken wooden cot.
Ram has spent his remaining money on buying two vials of Fungizone, a drug prescribed by a private doctor. He has administered it to both children. But the complete course requires another 10 vials at an additional cost of Rs. 6,000, now entirely beyond his reach.
But why not go to a government hospital, where treatment is free?
"The conditions in these hospitals are pathetic. When patients visit a government hospital, medical assistants warn them of prevailing mismanagement, saying they would die if they sought help there and suggesting they go to private clinics. People in distress tend to run toward even the dimmest ray of hope," Akela says.
A former health minister and renowned expert on kala-azar, Dr. C.P. Thakur, agrees the situation is grim. "The problem is present in 31 of the 38 districts of Bihar, with kala-azar assuming alarming proportions especially in the Terai belt stretching from Hajipur to the Nepal border," Thakur says. "The official statistics are confined to patients registering at government hospitals and this number exceeds 45,000. Others, who visit private clinics and fail to continue the expensive medical treatment and die, remain unaccounted for."
According to health experts, the disease has received little attention despite the fact that it affects more than 500,000 people every year. Forty percent of these die, making it the third most fatal disease after heart ailments and cancer. However, since it is primarily confined to the rural and backward areas of developing countries, concerted action has not been initiated.
The same story goes for other tropical diseases, which normally plague the most downtrodden. The World Health Org-anization says that nearly 1,400 new drugs have found their way into the global market between 1975 and 1999, but only 13 of them were for the treatment of tropical diseases. The biggest issues concerning kala-azar still remain the availability, affordability and accessibility of drugs.
"The earliest instances of kala-azar in Bihar date back a century ago. Due to the continuous spraying of the insecticide DDT until 1964, as part of the program to eradicate malaria, sand flies were not able to breed. But since spraying was stopped, the '70s saw a sharp rise in cases," Thakur says.
By 1977, kala-azar had assumed alarming proportions in four Bihar districts: Vaishali, Muzaffarpur, Sitamarhi and Samastipur. Nearly 125,000 cases were registered, out of which 4,700 people died. The only drug available at that time, sodium antimony gluconate, was not very effective. Spraying was resumed, and the '80s saw visible improvements.
But the disease resurfaced with a vengeance in 1991-1992, affecting more than 250,000 and killing more than 10,000. The government says it is bracing itself to avoid a repeat of the 1991 horror. A task force on kala-azar has been constituted to make drugs available at low cost and also to bring about large-scale reforms in the health sector. "The situation has improved significantly since then, and we do have certain effective medicines. Amphotericin B, despite being a little costly, is an effective medicine with fewer side effects," says Thakur, who is leading the task force.
Indian health experts also have their eyes on pharmaceutical advances in the United States, which they say could revolutionize the treatment of kala-azar.
"The American pharmaceutical company Institute for One WorldHealth has come up with its own drug, Paromo-mycin. It is presently undergoing phase four clinical trials. So far, the results have been fairly positive and it could also turn out to be a drug with significantly lower costs," says Dr. Pradeep Das of the Rajendra Memorial Research Institute of Medical Sciences in Patna, which conducts research on kala-azar.
Victoria Hale, founder of the San Francisco, California-based One World-Health, visited Bihar in 2000, and said, "I had never seen such hopelessness on the faces of people, until I saw kala-azar!" Since then, her institute has been closely working with the Indian Council for Medical Research for an affordable kala-azar treatment. Clinical trials by the agencies have been funded by the Bill and Melinda Gates Foundation.
Gland Pharma Limited, a drug manufacturer based in Hyderabad, Andhra Pradesh, is working with One World-Health and other collaborators. It has received regulatory approval from the Drug Controller General of India for Paromomycin IM injections, a treatment for kala-azar. Grand Pharma has agreed to act as the global manufacturer to ensure access to all those who need it.
Dr. Das at the Rajendra Institute, where clinical trials of Paromomycin are under way, says 50 patients are undergoing treatment there. "Our main focus is analyzing the efficacy of the drug and minimization of its side effects. So far, there have been no major side effects nor has there been any question mark over its efficacy. Its effective rate has been 93.4 percent; therefore this drug may be considered safe, effective and affordable. Now the focus should be on making it accessible as well."
