Gujarat’s Scheduled Tribe population is disproportionately afflicted with leprosy, but camps held to ascertain the incidence of the disease in the population have not recorded data specific to the marginalised community, for fear of being discriminatory.
A leprosy case detection campaign (LCDC), conducted from February 4 to February 22, found that there has been a substantial decrease in the total number of new cases of leprosy infections in the state. The number fell from 1,219 cases in 12 districts, where the disease is highly prevalent, in August to 717 cases in nine highly endemic districts in February. However, numbers specific to the Scheduled Tribes are unavailable for this year. They were last recorded in 2016-17, when it was found that 64.8 per cent of leprosy affected people were from the Scheduled Tribes. The figure had gone up from 63.91 per cent in 2015-16, and is way higher than the national average of 18.8 per cent in 2016-17 and 18.79 per cent in 2015-16.
The cause for such high incidence in the population: the bacteria responsible for causing leprosy survives in humid and cold temperatures of the hilly regions of the state, where tribal people mostly live, said State Leprosy Officer of the Commissionerate of Health Dr Girish Thaker. “These nine districts (Bharuch, Narmada, Panchmahal, Dahod, Chhota Udepur, Navsari, Valsad, Tapi and Dang where the disease is highly endemic), are either humid locations or forest areas,” he said. “However, for our record-keeping, we do not demarcate Scheduled Tribe cases anymore as we believe it is discriminatory.”
The state has, however, made progress in reaching out to patients who might not seek treatment for fear of being stigmatised by society. The Indian Express spoke to two leprosy paramedical workers (PMW) in highly endemic districts. They said their biggest challenge was to get patients to take their medication.
“Patients don’t want their neighbours to see them collecting medicines at a primary health centre, for fear of being outcast,” said one of the paramedical workers. “At other times, patients don’t take medication because they don’t understand the seriousness of the disease”But things are improving.“Today ASHA (accredited social health activists) and PMW go door-to-door to check on cases,” Dr Arun Parmar, a medical officer with the state’s department of health and family welfare, said. “Patients can also opt to get their medicines home-delivered.” However, the stigma is real.
Mamta Patel, 40, who had reconstructive surgery for her leprosy-afflicted hands, has been married for 16 years to Praveen Patel. She is uncomfortable visiting her in-laws. “There is awareness now, so no one says anything outright, but it is always evident, with separate utensils [for me] and continuous glances at my hand and deformities,” says Patel. The couple stay at Sahyog Kushtha Yagna Trust, a government recognised NGO in Sabarkantha that rehabilitates leprosy patients.
Dr MF Sheikh, head of the burns and plastic surgery department at Civil Hospital, said the need for reconstructive surgery has fallen now. “It is usually someone who has had leprosy for 10-12 years that requires surgery,” he said. “Such cases have become uncommon now.”
The case of middle-aged Dattabhai Hingle illustrates why treatment should be taken early. “There wasn’t any discomfort so I didn’t take medicines” he said. “But ten years later, I couldn’t blink, my eyelids weren’t shutting even when I slept and I had to get surgery done.”
The government has been striving to bring down the prevalence rate to below 1 in the 33 districts in the state. Nine districts are yet to meet this target.
Notably, there has been a fall in new cases in Gujarat. As of February 22, 4,118 new cases were reported for the year 2018-19, compared to 6,894 in 2017-18. But the outlook for Gujarat is positive. From ranking fifth highest among states in which leprosy was prevalent In 2014-15, Gujarat has fallen to seven.
Some cases, however, stay off the radar. This is because it is difficult to track leprosy among migrant labourers, says Dr Arun Kumar, district leprosy officer at Panchmahal. And sometimes health workers overlook the severity of symptoms, he said.