Mayri Dulsada looks puzzled whenever a health official visits her hutment in Dapada village in Dadra and Nagar Haveli. Over the past month, the seven-year-old has had to display the circular white patch on her right thigh to a number health officials and doctors visiting from the union territory's capital Silvassa. The patch has been growing steadily over the past few weeks.
In charge of leprosy control in Dadra and Nagar Haveli, Dr Manoj Singh visited Dapada in September to take stock of the leprosy case detection programme. Health workers brought Mayri who was playing with her friends to Singh for a simple examination. “She is a classic case of leprosy,” said Singh pointing at the anesthetic white patch. Taking a ball pen from his shirt pocket, he pricked the site of the patch and enquired if Dulsada felt anything, but she was too confused to answer.
Dulsada was diagnosed with leprosy in the national leprosy case detection campaign, an exercise rolled by the union health ministry as the number new cases of leprosy across India refuse to decline.
Between April and August this year, 40 children were detected with leprosy in Dadra and Nagar Haveli, which is 24% of all new cases detected in the region.
According to the National Leprosy Eradication Programme, the union territory has the highest proportion of childhood leprosy cases in India after Lakshadweep. Dulsada’s family does not understand the fuss people are making about the patch on their child’s leg.“Her mother told us that she has some white patch but it is not paining,” said the local accredited social health activist or ASHA. “When we saw it, we knew it was the safed chata (white patch).”
Health workers in the villages of Dadra and Nagar Haveli call leprosy safed chate ki bimari or white patch disease. A person infected with Mycobacterium leprae can take as long as 20 years to exhibit any symptoms of the disease. The disease spreads from human to human through the respiratory route but it is not very contagious unlike, say, the flu.
Hunting for better detection tools
India has achieved elimination of leprosy meaning that the prevalence of the disease is less than one case per 10,000 populations in 2005. However, the number of new cases being diagnosed has remained stagnant indicating the active transmission of the disease in the community. India accounts 62% of the global burden of leprosy.
To arrest this active transmission, the Indian government decided to screen close to 32 crore people living in districts where the prevalence of the disease is more than one case per 10,000 populations. However, experts closely monitoring the leprosy elimination efforts of the government feel that this screening campaigns are knee jerk reactions. “What we need is active case detection," said Dr N Mistry at the Foundation for Medical Research, a national research organisation recognized by the Government of India. "Health workers have lost the art of detection.”
Mistry believes that the target of screening such large numbers of people is tall order. “The health worker will have to examine every person, head to toe, for any lesions,” said Mistry. Only a few health workers in Dadra and Nagar Haveli perform such thorough examinations.
“The program has done away with the smear test and it is true that the confirmation of the case is mostly dependent on the clinical diagnosis," said Dr Soumya Swaminathan, head of the Indian Council of Medical Research. "There will be a little bit of both under-diagnosis and over-diagnosis.”
The disused smear test relies on detecting rod-shaped red-stained leprosy bacilli that may be seen in the smears taken from the leprosy-affected skin. The smears however show positive results in a small proportion of cases and has been known to throw up false positive results.
To get more accurate leprosy diagnoses, the Central Leprosy Institute in Tamil Nadu is in the process of using polymerase chain reaction technology to develop an inexpensive rapid detection test for leprosy which can be used in the field by health workers.
Children contracting leprosy
Nine percent of all new leprosy cases in India between April 2014 and March 2015 were reported among children. Swaminathan said that the high proportion of childhood leprosy in India is itself an indication of active transmission. Doctors believe that the low immunity of children makes them more vulnerable to the disease.
“If we are able to bring down the burden of childhood leprosy only then we can say that the program is working in the right direction,” said Swaminathan.
Dulsada and many children like her who live in Dapada hardly get any vegetables to eat. “Most of them have rice and chapatis, which are also made of rice, there are no vegetables or fruits in their diet,” said Hasmukh Patel, paramedical worker of Amboli village where seven children were recently confirmed with leprosy.
Twelve-year-old Prashant Dhumada is one of the newly detected cases. He has stopped going to school since he was diagnosed with leprosy. “He does not look sick to me but [health workers] are saying that he will have to take medicine for a year because of some thickness on his earlobe,” said his father Shantaram, who owns land around his home in Amboli.
Unlike others, Dhumada did not have any white patches but the ASHA who visited his house found that he had a thickened ear lobe. “I did not know if it was leprosy but in such cases we refer the case to the doctor who said it is leprosy,” said Reju Chumble, ASHA for the Surangi area of Amboli village. “This is the first time that we are seeing such a case.”
The thickness on Prashant’s earlobe indicates nerve damage. Doctors have classified him as a case of multibacillary leprosy because of the involvement of the nerves near his brain and face.
Leprosy cases are classified into two types – multibacillary and paucibacillary – depending on the extent of the spread of the disease. Healthcare workers have been given a simple formula to classify these cases. If a patient has more than five patches or one big patch, they categorize it as multibacillary. These are the more infectious cases, meaning that they can transmit the infection faster compared to those with paucibacillary form of the disease.
Chumble examined Prashant’s younger brother Amol and found a patch which may be leprosy. “He also has a light patch, we think but are not sure that it is leprosy, we have kept him under observation and will refer him to the doctor,” she said.
A 2014 review of the existing studies about leprosy in children in India pointed out that multibacillary cases in children are common. A person with multibacillary infection is more likely to spread the disease to others. The study said that children can act as sources of many other new cases in the neighborhood and education institutes.
Understanding the possible risk of Dhumada spreading the bacteria to others who are in his close contact, his school mates and families living around his homes will be given a drug called Rifampicin as a prophylaxis against the disease. “Ideally, if you detect cases early and put them on treatment, the active transmission of the bacteria is expected to stop,” said Dr VK Das, head of the directorate medical and health services in Dadra and Nagar Haveli.
Das said that his team approached the Indian Council of Medical Research to conduct studies to understand the factors triggering transmission especially among children. “We could not trace one particular factor but the Indian Council of Medical Research recommended that we give Rifampicin medicine as a prophylaxis.”
Some experts feel that prophylaxis may not work and a vaccine against the disease could be the only solution to the protect people against the active transmission. Prophylaxis refers to the treatment given to people who are suspected to having contracted a infectious disease. For leprosy, a drug called Rifampicin will be given to the patients so that if they are infected, the drug will kill the bacteria. Meanwhile, the government is also considering administering vaccine to people living in areas where the incidence of leprosy is higher. The vaccine, Swaminathan said can give an immunity of at least three years against the disease. "We have also seen that the vaccine can improve the cure rate even if given to patients diagnosed with the disease," she said. The vaccine helps a person to develop immunity against the disease so in case he or she is infected, the body's own immunity can fight the infection.
The Indian Council of Medical Research had proposed to study the efficacy of the vaccine prepared by the National Institute of Immunology in districts in Bihar and Gujarat. The governments of Bihar and Gujarat are still considering the proposal. “There is still no clarity on the efficacy and side-effects of the vaccine," said Dr Bijoy Kumar Pandey, who is in charge of leprosy program in Bihar. "I have put the matter in front of the government to decide as it is not right to test the vaccine like this.”
Swaminathan of the ICMR said that the government is relying on scientific evidence before rolling out the pilot study. “We are looking at all three modalities. Using Rifampicin alone, a combination of both Rifampicin and vaccine and only administering the vaccine to vulnerable population. We will have to do something to protect the population against the disease and so we are looking at these different prevention interventions which can help reduce the incidence.”
Delayed diagnosis = deformity
About 10 percent of all new cases of leprosy that were detected in India between April 2014 and March 2015 had developed some form of deformity. A person diagnosed with deformity as a result of leprosy is classified as a grade I or grade II case depending on the extent of damage done. The highest number of cases were grade II deformities found in Uttar Pradesh, followed by Chhattisgarh and Bihar. Grade II deformities are visible damages in the hands, legs and face.
“The presence of cases with deformity only indicates that the patients were not diagnosed in the initial stage of the disease which allowed the bacteria to eat their nerves,” said Dr Bhushan Kumar, former professor of dermatology at the Post Graduate Institute of Medical Education and Research in Chandigarh. “[The government] relied on self-reporting but retrospectively it is clear that it does not work. We will have to go in the field and look for cases.”
“Some patients can start showing symptoms even after five to 20 years of contracting it,” said senior dermatologist Dr HK Kar. “The challenge with leprosy is that the person suddenly starts experiencing symptoms which are often neglected or confused with other illnesses.”
A person with leprosy is likely to develop skin lesions which are lighter than the actual skin of the patient, said doctors. He can also experience numbness in the feet, legs and hands. If the patient is not given antibiotics, his nerves start getting damaged sometimes irreversibly making it difficult for him to walk and hold things. “Such patients tend to develop ulcers because of the loss of sensation,” said Singh in Dadra and Nagar Haveli. “We provide them with footwear that can reduce such injuries as well as convince them to undergo free plastic surgery so that they can regain some function.”
Ravali Kakkad, 35, has lost sensation in both her feet. “After taking medicines there is some improvement and I can walk a little,” said Ravali, who lives in Dapada village. She is the only person in the family to have the disease but healthcare workers are monitoring the rest of the family for the development of symptoms.
“We were very confused as she didn’t have any white patch,” said Snehal, a healthcare worker. “She was complaining of some difficulty in walking.” It was only when they convinced her to go to the district hospital in Silvassa, which is about 11 kilometers away, doctors detected her with leprosy.
Under the National Leprosy Eradication Program, patients are provided free medicines for 12 months, regular supply of footwear as patients with leprosy tend to have get ulcers because of the poor sensation in their legs. Officials claim that regular camps are conducted so that patients with deformity can undergo plastic surgery to regain limb function.
Over-diagnosis, setting targets
Along with having to detect every leprosy case, health workers in Dadra and Nagar Haveli are spending time preparing reports to send the headquarters then detecting leprosy cases. An ASHA gets Rs 250 as an incentive if the case she refers for confirmation is indeed a case of leprosy and so each worker tries to send as many cases as possible.
“If we have no cases, they (seniors) will feel that we are not working,” said a medical officer from the union territory. “So we are trying to detect every white patch.”
However, the obsession of the health workers over a white patch is unwarranted, said experts. “A new cycle of capacity building in leprosy is the need of the hour as is the need of focussed and directed research on issues such as transmission, triggers of reactions and their treatment, surveillance for drug resistance,” said Mistry.
The program is so busy looking for cases, the adherence to treatment is not a priority at the moment. “We ask them if they are taking their medicines," said Patel. "We can’t go to their home every day to see if they are eating it or throwing it away.”
Mistry said the high burden of leprosy in India today stems from a basic lack of interest in disease after the prematurely-declared elimination. The lack of public knowledge that the disease has actually resurged is only making things worse.
This is the second part of a series on leprosy in Dadra and Nagar Haveli. You can read the first part here.
This reporting project is made possible partly by funding from the New Venture Fund (NVF) for Communications project, which receives support from the Bill & Melinda Gates Foundation.