INSUBCONTINENT EXCLUSIVE:
Aloka Gonju didn’t take much notice of the discoloured patch of skin on her left hand until her fingers began to stiffen and hurt
It became a struggle to pick leaves at the tea plantation where she works in Bangladesh.“I had no idea what was happening to me,” says
the 47-year-old, whose wages support her husband, four children and three grandchildren.By the time she sought help, the nerve damage in her
left hand was too extensive to regain its use
Gonju was diagnosed with leprosy two years ago.According to the Leprosy Mission, the vast tea plantations of Sylhet in the north-east of the
country, which employ about 600,000 workers – mostly women from minority groups – have the highest rate of leprosy in the world.The
charity, which works in 10 countries in Africa and Asia, found a prevalence rate of up to 15 cases for every 10,000 people, compared with
fewer than one in 10,000 in the rest of the country
Most families have someone infected with the disease.“In the tea estates of Sylhet, leprosy has been spreading much faster than our team
has ever seen,” says Dr Benjamin Rozario, the resident medical officer for the mission in Bangladesh.The tea gardens have an extremely
high number of new leprosy cases – the area is thought to have the highest density of people affected by leprosy in the world
Photograph: Ruth TowellThe UN’s special rapporteur on ending discrimination against people with leprosy, Alice Cruz, warned last month
that the country could have a high number of hidden cases of the disease.Leprosy is one of the world’s most neglected diseases
It is spread by moisture droplets passed through the air
Tea pickers, who usually live in crowded conditions in basic corrugated-iron homes on the plantations, and lack decent food, sanitation and
health facilities, are particularly vulnerable to infection.Drugs can stop the disease progressing, but they cannot reverse
disability.Gonju, who works on a plantation in Srimangal, still picks tea but now relies solely on her right hand
She is paid according to how much she can pick, so her reduced capacity means her and her family struggle by the end of each month.“It
breaks my heart but I’m lucky I started treatment when I did,” she says, while taking an afternoon break in the shade
“If I had lost both hands to leprosy, I would have lost my job and my home.”Adamarvili, left, and Dalamar, right, pick tea in a
plantation in the Sylhet region
Photograph: Ruth TowellShe now helps to run a support group for people with leprosy living on her plantation.The Leprosy Mission team has
cured more than 1,600 cases since it started working in the plantations in 2017
It has set up pop-up clinics on the plantations and assigned community health workers and doctors to search for the signs of leprosy and
provide the support and care patients need long term, before they lose the use of limbs, and potentially their livelihoods.“For many here,
the journey to the hospital is too expensive and too far away to walk,” says Rozario
“That’s why we bring the hospital to them.”The World Health Organization declared leprosy eliminated in Bangladesh in 1998, but that
meant it had fewer than one case for 10,000 people, not that there were no more infections
According to the WHO, the country still has the fifth-highest number of leprosy cases in the world.We have to keep working until we’ve
reached every person affected with leprosy – nobody should be left behindFazlur Rahman, mayor of Moulvibazar district in Sylhet, says the
declaration led to a decline in the funding and attention devoted to the disease, which caused it to re-emerge.“Since the WHO declared
leprosy eliminated in Bangladesh, there has been a significant lack of funding and resources to address the issue, which still very much
“We have to keep working until we’ve reached every person affected with leprosy in every district – nobody should be left
behind.”Bangladesh has pledged to wipe out the disease by 2030, but, during a visit to Bangladesh in February, the UN’s Cruz said that
goal would not be achieved without more funding and action.“I am concerned that the state administration is failing to implement this
Adequate budget allocation with clear targets, indicators and benchmarks is essential to turn the government’s pledges into reality,”
Cruz said, adding that people with leprosy were not seeing the benefits of the country’s rapid economic growth.Protap Kurmi, 36
Due to a late diagnosis, where his leprosy was missed three times by a government hospital, his hands are now seriously affected by leprosy
Photograph: Ruth TowellProtap Kurmi, 36, was a tractor driver on a tea plantation in Srimangal until he contracted the disease
He knew there was something wrong when he was unloading a trailer full of tea leaves and could not grip the handle.Over the next few months,
his fingers became stiff and began bending in towards his palms
The disease had already impaired the nerves in his hands by the time he was diagnosed by an outreach worker.No longer able to drive a
tractor, Kurmi works as a security guard on lower pay
He struggles to feed and wash himself, requiring help from his wife for daily tasks, and his hand trembles when he picks up a glass of water
to drink.“Before I was able to work and support my family but now I feel stuck … my wife and I were hoping to start a family but
everything feels out of reach now,” Kurmi says.Philip Gain, a Bangladesh researcher and director of Society for Environment and Human
Development, said the conditions in which tea pickers live and work have a clear impact on their health
Many are undernourished, while serious illnesses often take a long time to be diagnosed because there are fewer health facilities and
workers cannot afford time off to seek treatment.A self-help group in a tea estate meet and drink tea
Photograph: Ruth Towell“Workers don’t get casual leave, they don’t get maternity leave
You don’t find toilet and washing facilities in these areas, where 95% of tea workers are women
They eat their lunch – a very poor-quality lunch – under the shade of trees, out in the open,” says Gain.“They can never own their
land or the houses they live in; they don’t have economic opportunities to migrate outside the tea gardens; so they are tied in a captive
situation.”Last year, tea workers went on strike for better pay
The government intervened, and raised their daily salary from 120 Bangladeshi taka (90p) to 170 taka a day.Gain says tea plantation owners
claim they pay lower wages because they provide the workers and their children with accommodation, education and healthcare, but the
services they do provide are basic.
This article first appeared/also appeared in theguardian.com
