In South Burma, a Leprosy Colony Struggles With Budget Cuts, Discrimination
By Lawi Weng 26 December 2012
MOULMEIN, Burma—Jwe Yin has a house and garden in Burma’s southern Mon State, but she never goes there anymore. The 72-year-old mother says her children abandoned her at a hospital when she developed leprosy more than five years ago, and she has lived there alone ever since.
“My children never came back to visit me,” she said, crying at times in an interview with The Irrawaddy at Mawlamyine Christian Leprosy Hospital in the state capital Moulmein (Mawlamyine), about 300 kilometers southeast of Rangoon. “I’ve been taking medicine, and I’m healthier now.”
Despite her old age, Jwe Yin doesn’t seem sick at first glance, her face powdered with a touch of makeup. But the leprosy has obviously taken its toll: Her fingers and legs were amputated due to the disease, which, when left untreated, can cause progressive and permanent damage to the skin, nerves, limbs and eyes, according to the World Health Organization (WHO).
The hospital in Moulmein is home to about 200 leprosy patients, including children, and many have stayed there for more than 40 years. Some have married other patients, building families within the hospital compound.
In total, about 2,000 people live at the hospital. In addition to patients receiving treatment, people who formerly had leprosy make their homes here. Many are amputees or have become disabled due to the disease. Of all the residents, about 700 are children, and doctors help give them an education.
Residents dare not leave, said patients and hospital staff, for fear of discrimination in the outside community.
Discrimination takes many forms, said the hospital’s president, Tin Aung Swe, who also leads Burma’s national council for the Young Men’s Christian Association, popularly known as the YMCA. Sometimes when patients create handicrafts for sale in the community, he said, people refuse to buy after learning where the products came from.
But fears that the disease will spread through touch are unfounded, said WHO’s goodwill ambassador for leprosy elimination, who visited the hospital on Friday.
“There’s no need to fear infection,” said Yohei Sasakawa, who is also chairman of the Nippon Foundation, a longtime donor to WHO’s leprosy program, and Japan’s goodwill ambassador for the welfare of national races in Burma.
Yohei Sasakawa held the hand of a young leprosy patient, a girl in her early teens. “You will get better soon. You may even be fortunate enough to marry in the future,” he told her with a laugh.
Leprosy, a chronic infectious disease that can affect the skin, peripheral nerves, the upper respiratory tract and the eyes, is not highly infectious, according to WHO. The bacterial disease can spread through droplets from the nose and mouth, the health organization says, but that is after close and frequent contact with untreated cases.
About 182,000 people, mostly in Asia and Africa, were affected by the disease in the beginning of this year, according to WHO figures, while nearly 220,000 cases were reported the year before.
Dr. Chan Lwin, a leprosy specialist at the hospital in Moulmein, said the hospital cared for between 400 and 500 leprosy patients from 2001 to 2011.
Patients say they receive free medical treatment at the Christian hospital, with some traveling all the way from Rangoon for care.
“The hospital gives us everything free, including medicine and food,” said one patient, an ethnic Mon woman from Ye district.
Another patient, Kyi Ngwe, said the hospital was helping her recover after she was forced to amputate her leg. The 32-year-old woman from Rangoon was abandoned by her husband when she developed the disease, and by the time she heard about the hospital in Moulmein, her symptoms had progressed and surgery was necessary.
“The doctors gave me a fake leg and I got better, and I hope I can walk soon,” she said.
Bund funding does not always flow readily, according to hospital board member Win Tin, who said the government only agreed to give the hospital half of its proposed budget.
“We have to rely on donations from others, mostly from NGOs,” he said.
Mi Hla, 24, has had leprosy for two and a half years. She said her condition improved when she first came to the hospital, but staff members there recently told her to take less medicine, and now her symptoms are getting worse.
A low budget is also hampering another project at the hospital: an HIV clinic.
“There are about 500 HIV patients [seeking treatment], but we can only care for about 400 of them. It’s really sad,” said health worker Tun Aung Kyaw, who added that patients lacked adequate provisions, including water.
Although more people with HIV are learning about the clinic, they struggle to reach the hospital due to poor transportation options. The doctors have only one car to drive patients from different townships.
“We need better ways to transport people,” said Lay Lay Khet, a health worker who takes care of HIV patients. “This is what we really need.”