By Chareeni Kurukulasuriya
We pass rows and rows of identical blue-concrete buildings; the tin sheets that jut out from each roof cast a shadow on the cracked pavement below. Finally, the motorcycle we are trailing in our car comes to a halt and the female rider disembarks, brushing off the dust from her scrubs before entering the medical dispensary building. I search the tops of each building for the numbers painted above the doors, the only thing distinguishing each block from the next. From here, the marble mountains aren’t even visible on the skyline, a reminder of how removed I am from the Vegas-esque strip of casinos and luxury beach resorts of Da Nang proper. The only thing these two city neighborhoods seem to have in common is the sand under my feet. The translator joins me on the doorstep of building F-03, and I check the list of names and birthdates on the sheet in my hand. After so many dead ends, I am finally about to meet the residents of the leprosy community, formerly of Hoa Van village, now of Group 14, Hoa Hiep Ward, Da Nang.
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Leprosy is an outdated disease in many parts of the West. Less than 150 new cases of leprosy occur each year in the United States, and these patients are primarily those who have returned from foreign countries where the disease is endemic: countries like India, Indonesia, and Vietnam. Its prevalence in Southeast Asia poses a major concern for countries like Indonesia, where as many as 19,000 new cases occur each year, or Myanmar, where disease-burdened populations are neglected due to ineffective state treatment programs and lack of follow up care. In Vietnam, though, more sinister public health threats exist: upwards of 100,000 new cases of tuberculosis are reported each year, and a sudden measles outbreak that hit the country in early 2014 caused more than 130 fatalities. Diseases like these receive far greater attention from the regional World Health Organization (WHO) office than the 250 or so new cases of leprosy that crop up each year in the Central Highlands, where the disease is endemic.
No longer considered a public health threat, leprosy received scant attention from media organizations until 2013, when authorities forced an isolated leprosy community in the village of Hoa Van to relocate to the outskirts of Da Nang. During the 1950s and 60s, people with leprosy were unable to stay in their home villages because of their stigma of their illness and the potential for transmission. Many then traveled to Hoa Van, located on an isolated peninsula in the Central Highlands, where they made their living as farmers and fisherman. Recognizing the villagers’ unmet need for medical attention and the growing population of uncured leprosy patients, an American missionary doctor Gordon Smith established a leprosarium in Hoa Van in 1968. When the Vietnam War ended seven years later, his establishment became a government-controlled hospital.
Even the cured villagers of Hoa Van remained in isolation after the war. “With the post-1975 changes in administration, there was a lot of migration, and so even patients who were cured were unable to find familiar faces upon returning to their family’s villages,” explained Jan Robijn, the Vietnam representative for Netherlands Leprosy Relief (NLR), a Dutch non-governmental organization. People with cured leprosy preferred to stay in villages like Hoa Van, where they still felt a sense of communal belonging. Following the country’s reunification, the government made greater attempts to implement reverse integration in communities like Hoa Van, giving families incentives to move to such colonies and providing those villages with proper rights and a civil structure.
The village of Hoa Van no longer exists. In 2013, the People’s Committee of Da Nang requested that Hoa Van’s 70 residents, only half of whom had suffered from leprosy, relocate their homes to the Group 14 housing. The BBC article I read covering the story described with little detail the rude eviction of the residents from their homes and their struggles to manage with the compensatory money and block housing provided by the Vietnamese government. Intrigued, I hoped to find where the residents had been transplanted and hear more of their story. Was the uprooting as tumultuous the reports implied, or was there an unspoken side to the story?
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I wait in the sparsely furnished living room. Its walls are the same blue as the pattern of the shiny linoleum on the floor and the exteriors of all the line houses in the project. Trinh Khen rolls himself out on a makeshift wheelchair, a wooden board attached to a set of wheels. His grandchildren help him settle into place when he is unable to position himself with his own hands. Khen bears the hallmark pale skin patches of one who has suffered through the disease, the permanently curled fingers and missing toes indicating the severity of the nerve damage in his extremities.
A common misconception is that leprosy causes the limbs of a patient to fall off. In reality, it is the strain of bacillus bacteria Mycobacterium leprae that infects the skin and damages the nerves, resulting in loss of sensation and muscle paralysis as the disease progresses untreated. It is the lack of sensation that leads to greater risk of injury, often without the patient’s awareness that the limb has been damaged. Lack of care for such injuries can then lead to secondary infections of the open wounds, where gangrene will ultimately kill the tissue and typically require amputation.
Typically, the progression of a patient’s leprosy to such a degree of disability is avoidable. “Once a patient is diagnosed with leprosy, a few months of multi-drug treatment therapy (MDT) is all it takes to cure the disease,” said Dr. Cornelia Hennig, a medical officer at the WHO’s regional office in Vietnam. By enforcing strict registration policies, the Vietnamese government has greatly improved disease detection in recent years. Families are increasingly aware of the free health insurance, welfare, and disability benefits to which they are often entitled.
Yet, diagnosing leprosy was not always such a straightforward task. A staggering 14,000 people suffer some form of disability caused by leprosy in Vietnam. Many of these patients are elderly (the average age in Hoa Van is about 65) and unable to work either because of their condition or their age. “I lived with the disease for three years before I decide to move to the Hoa Van village to seek treatment,” explained Trinh Thi Phuong, a resident of Group 14. “The first treatment course I took was a local antibiotic, but I found out I was allergic to it and couldn’t be cured with it.” Only seven years later was Phuong able to get access to a newer Japanese medicine that cured her after two years of treatment. Unfortunately, her disease had progressed too far during the interim between her treatments. Doctors were force to amputate her right leg, where a wound had festered unnoticed. Like the other names on my list, she was fortunate enough to receive a prosthetic limb with the help of NLR.
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The People’s Committee of Da Nang visited the Hoa Van community early in 2012, prior to the move, to explain to the benefits of relocation to village’s residents. City officials offered compensation in the form of a large sum payment and free block housing. They stressed that better education and job opportunities within the city that would become available to the residents’ children. “It feels okay that I had to come here because my grandchildren can have a better life and schooling here near the city,” said Khen. “I can be happy about my life.”
Tran Day and his wife met in Hoa Van, after both left their home villages having contracted leprosy. In Hoa Van, they relied on farming, raising livestock, and fishing. “Since then, we were able to care of each other,” Day said. “Life was comfortable.” But in the city, neither has found a job. Instead, they must manage on the government’s $40 USD monthly disability checks.
Before, Hoa Van residents could only reach the markets and hospitals of Da Nang by boat, a long and strenuous trip around the peninsula to the city, or by making the dangerous trek down the railroad tracks of the Hoa Van pass. There was no space between the tunnel walls and the sides of a passing train. To misjudge the length of the trip could be fatal.
According to Dr. Nguyen Pham Van Thanh of the Lien Chieu district hospital, the government has furnished Group 14 residents with a small treatment dispensary on-site, as well as attendants to provide daily help. “All their medical fees are taken care of,” he said. Day and his wife admit that life is better in Group 14, where they are close to the hospital and doctors come by each month to administer any necessary medical treatment.
But Tran Day questions whether the government’s motives in forcibly relocating Hoa Van were truly altruistic. Officials stressed to Day and his wife their concerns for the villagers’ safety during the October/November typhoons. “It’s true that we would have a rough season some years, being so isolated and on the coast,” he noted, “but I also knew that the People’s Committee wanted to give the land for tourism use, too.” Supposedly, a French developer approached the Da Nang municipal government, expressing interest in that area of land, though plans to build any type of resort there remain unconfirmed. “The thing about Vietnam is that individualism is very different than it is in the West,” noted Robijn of NLR. “It’s about putting the group first before oneself, and in Vietnam, everything is the government. The residents, they are the government, and so the government has every right to move them off that land in their minds.”
Trinh Khen’s comments echoed Robijn’s assessment. “I knew that the government was planning tourism development in that area,” he explained. “I understand that it’s what was good for the government, and I’m not angry.”
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The primary issue that the people of the Hoa Van community now face is adjusting to an urban lifestyle, not gaining access to healthcare. “Life here has a much higher cost of living that we were used to in the village,” explained Phuong. “It’s tough to have enough wood for cooking and pay for water and food with just $40 USD each month.”
Some families, like the Days, have children who are able to assist with managing the home and providing an income to supplement the disability and welfare checks the family otherwise receives. “A very close friend of ours from Hoa Van, who didn’t have the disease, knew how much we wanted children but couldn’t,” Tran Day told me, as many leprosy patients face problems with fertility depending on the disease progression. “We adopted their daughter, and she thinks of us as her own parents now.”
Though the Day family is glad to reap the benefits of living nearer to the city, not all the residents have embraced their new home so quickly. “People from the city are very different than in the village. In Hoa Van, people wouldn’t take your roof when it was blown off in a typhoon; here the city people will steal anything if you can’t protect your house,” said Phuong, still angry about the theft of her family’s motorcycle last month.
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The last name on my list is Le Van Ngo. When I approach his doorstep and explain my purpose, he is the only person not to welcome me into his home. He seems nervous and hesitant to answer my questions about his history of leprosy and life at Hoa Van. I show him my list from NLR, which shows that he did receive a prosthetic leg from them.
“I am not a patient here because I never had leprosy,” Ngo says. “I lost my leg during the war and was treated for it, but I moved here with the Hoa Van residents because we have a shared way of life.” Ngo sees no social stigma associated with having leprosy, and he feels at home among people who were once ostracized from their own homes. His words are a sign that it is not the location of the houses but the shared community of the former residents of Hoa Van that will help them to adjust to their situation together. The community is not one of disease but a place where everyone has learned to live full lives with their disability. “We will all miss the Hoa Van village and the life we had there, but I still feel happy to start a new life here with everyone.”
As I drive back to the city center, and the elaborate bridges and buildings come into view, I can’t help but think that the people of Group 14 are only in isolation for now. Given Da Nang’s rapid urbanization rate, it may not be long before the project housing of Group 14 is truly integrated into the city, and the people of Hoa Van into its many communities.
Chareeni Kurukulasuriya ’16 is a Molecular, Cellular, & Developmental Biology major in Morse College. Contact her at chareeni.kurukulasuriya@yale.edu