Sandeep Gupta fidgets nervously in a Mumbai clinic while waiting to learn if the white patches and boils that appeared on his elbow a month ago mean he has leprosy -- the disease that disfigured his cousin and maimed millions of people in India and elsewhere for 8,000 years.
The lesions on the 12-year-old’s arm are a sign of leprosy which, left untreated, can cause disfigurement and nerve damage. While leprosy, described in Indian texts from the 6th century BC, has been cleared from the developed world, it’s regaining ground in India, which has become the biggest source of cases imported into the U.K. and Australia.
Sandeep’s doctor, Vivek V. Pai, who runs the Bombay Leprosy Project and has treated patients for 26 years, blames overcrowding, poverty and neglect for keeping the disease entrenched in Mumbai slums. Its persistence is a reminder that even as the world’s largest democracy prepares to send a rocket to Mars this year, its economic success is leaving many behind.
“There are pockets in Mumbai where prevalence is still high,” Pai said in an interview from his clinic on the outskirts of India’s most populous city. “The government says the disease is eliminated, but in these areas things haven’t changed.”
Leprosy, also known as Hansen’s disease after G.A. Hansen, the Norwegian scientist who discovered its microbial cause 140 years ago, is mentioned at least 50 times in the Bible. In the Middle Ages, those afflicted by the disease were forced to wear special clothes and ring bells to alert others as they passed.
New cases have increased the past two years in India in tandem with an uptick in relapses in previously treated patients, according to World Health Organization data released last month. India’s 850 self-settled communities of sufferers -- some located in the shadows of technology parks and gleaming towers -- reflect the stigma attached to the disease and of the social and economic isolation it causes.
“Even today, there are people affected by leprosy who still live in leprosy colonies because they have no other option,” said Yohei Sasakawa, chairman of the Tokyo-based aid group Nippon Foundation, who has worked for the elimination of leprosy for more than 40 years.
Nationally, India’s leprosy prevalence dropped below 1 case for every 10,000 people in 2005, allowing the country to claim elimination. The disease, which causes chronic skin sores, nerve damage and muscle weakness, is usually spread through close contact with untreated cases via bacteria-laden respiratory secretions, or through contaminated soil.
This year, 36 districts reported a prevalence of more than 2 cases per 10,000 people, nine more districts than last year. The worst-affected was Tapi, in the western state of Gujarat, where there were 6.55 cases per 10,000 people in March, compared with 4.03/10,000 last year.
“I tell politicians, if you want to demonstrate India’s progress, you can’t afford to have a disease like leprosy,” said S.K. Noordeen, who led the WHO’s global leprosy elimination program from 1984 to 1999 and now advises the Indian government on the disease. “And if you let this go on for a long time, you may see some future problems like drug resistance -- a much more difficult situation.”
The infection has an incubation period of about five years and symptoms can take as long as 20 years to appear.
Lining up with Sandeep in Pai’s Mumbai clinic one morning in August were dozens of adults with open sores, curled or missing fingers and bulbous growths on their faces. Sandeep’s skin condition is suspicious of leprosy and Pai said he wants to see the boy again in two months to check if it’s worsened. If it has, Pai will take a swab and have it tested for the bacterium.
Sajir Shaikh traveled 2.5 hours by bus to Mumbai from a small town to have Pai examine the pink nodules that have appeared all over his arms, legs and back. Shaikh, 25, was treated for leprosy three years ago.
Now, he’s having trouble opening his thickened, swollen eyelids and raising his head, he says, causing him to believe the disease has reappeared. His older brother and two nephews have also been infected and treated for the bacterium.
Last year, 697 new leprosy cases in India were reported among patients previously treated for the disease. Relapses can occur when people are re-infected with the bacterium, treatment guidelines aren’t followed, or the three-drug regimen supplied free by the WHO hasn’t worked, possibly because of antibiotic resistance.
“The risk exists,” said Emmanuelle Cambau, associate director at the French National Reference Center for Mycobacterial Infections, who is part of the WHO surveillance network for drug resistance in leprosy. “For now, it’s low, but we must be vigilant.”
Resistance to the antibiotic rifampicin, a key component of multidrug therapy, was first documented in 1976, Cambau said in a telephone interview from Paris. The same medicine, made by companies including Lupin Ltd., is also used to treat tuberculosis -- caused by a bacterium from the same family as leprosy. Rifampicin-resistant TB is common in India, studies show.
Resistance can develop when undiagnosed leprosy sufferers take antibiotics repeatedly for other ailments, Cambau said. Those people can then pass on their resistant germs to others.
To deal leprosy a real blow, “there needs to be a political commitment, a medical commitment and financial backing,” Cambau said. Trouble is, many view the disease as a thing of the past. “With leprosy, people have this impression that it’s over, that it’s part of history,” she said.
India’s National Leprosy Elimination Program was supported with loans from the World Bank until 2004 and the Indian government took over funding the following year. Baij Nath Mittal, a former deputy director-general of the program, and another health ministry official were convicted last year of misappropriating 14.6 million rupees ($229,000) of WHO and Unicef leprosy funds from 1991 to 1993 and sentenced to jail, court documents show.
While funding for Pai’s Bombay Leprosy Project has dried up, his clientele hasn’t. His center used to get $65,000 a year in funding from groups including the German Leprosy and TB Relief Association and the Spanish non-profit Mumbai Smiles. It now exists “year to year,” Pai said.
That’s frustrating efforts to ensure patients complete treatment as well as attempts to track down those they may have infected and are unaware they carry the bacterium, he said. The clinic finds 25 to 30 people a year who test positive during visits to high-prevalence neighborhoods.
“By the time they come in for treatment, it’s too late and they’ve infected so many,” Pai said. “It’s important to monitor the trends in bacteriologically positive cases. It indicates that transmission is continuing.”
India accounted for three of every five new leprosy cases worldwide last year, or 134,752 of the 232,857 cases reported globally, the Geneva-based WHO said in an Aug. 30 report. New cases have increased annually from an historic low of 126,800 in 2010, yet remain well below the 560,000 recorded as recently as 2000, thanks to the effectiveness of multidrug therapy.
“As economies developed, as people became more and more aware of hygiene and sanitation, leprosy gradually disappeared from Europe and other parts of the world,” said David Heymann, a former WHO assistant director general who headed the agency’s polio program and helped eradicate smallpox from India. “I think it’s still pretty early to talk about that in India.”