With the government’s response to the HIV/AIDS epidemic failing to meet the needs of patients, the National League for Democracy founded two HIV/AIDS-shelters in Yangon. No-one is turned away.
Ma Cho Cho Myat knew she was sick. Her legs hurt. She felt weak. Her hair was falling out. The hospital told her it was something called AIDS, but she didn’t know what that meant until her parents expelled her from their home and forbade her from seeing her daughter. Suddenly the strange disease was the only thing she had left.
Ma Cho Cho Myat, 44, told her story in the dormitory of the National League for Democracy’s HIV/AIDS prevention and care centre in Yangon’s outer South Dagon Township, where she has lived off and on for two years. She was resting with a cold as she spoke, but usually helps out in the kitchen or washes clothes for the centre’s other residents. The shelter provides her with counselling and a place to stay while she receives treatment elsewhere in the city.
It is a comfort for Ma Cho Cho Myat to be among others who share her plight: People marked with death in the eyes of their friends and families, who dare not seek help in their hometowns; even if they knew what to look for, even if they could find it.
The centre has been accepting those who are HIV positive, such as Ma Cho Cho Myat, since it opened in 2002. The NLD opened a similar centre nearby a few years later and the two facilities are accommodating about 180 people, including 30 children. Individuals, and sometimes whole families infected with HIV, the human-immunodeficiency virus, come from throughout Myanmar to receive treatment. The centre provides them with shelter, food, transportation and medicine.
“It isn’t supposed to be long term,” said shelter director Ko Yaza, but no one is turned away. Some have called it home for years. For those who succumb to the disease, the shelter arranges their funerals. Maung Aung Paing Soe, 14, who lost his parents to the virus, moved in permanently after growing too old to stay at a nearby orphanage.
A badge of death
The estimated number of people living with HIV in Myanmar hovers between 170,000 and 220,000, but an untold number have not been diagnosed. Many of those who have been diagnosed do their best to hide it.
“People didn’t want to go to [the Waibargi Infectious Diseases] hospital,” said Ko Yaza, referring to the shelter’s early years. “The rumour was patients died there because the government wanted to get rid of them and was poisoning them,” he said.
That kind of hearsay was common when NLD activist Daw Phyu Phyu Thin – who in the 2012 by-elections won a Pyithu Hluttaw seat for the party in Yangon’s Mingala Taung Nyunt Township – and a handful of volunteers began welcoming patients, at first at a party office and then in the shelter, built on land owned by her family.
In those days, the government effort to combat HIV/AIDS was beginning and was constrained by a limited health budget and an anemic healthcare system. But far more toxic was the decades of pent-up fear and superstition about AIDS.
“Places like hospices provided by monasteries or this shelter run by the NLD, they were really important because as a result of stigma and ignorance people were being forced out of their homes, from their families and their communities or the need to access treatment only available in limited locations at that time,” said Eamonn Murphy, the UNAIDS country director. “So people hid their HIV status, and still do, until late in the infection. Which is when you’re so sick you can’t really hide it,” he said.
Access to treatment for those with HIV/AIDS has improved dramatically in recent years. The government is allocating more funding to health and rebuilding the healthcare system. An increasing number of domestic and foreign organisations are providing treatment and care. But the stigma of infection still clings like a cancer to the HIV community. A woman might be shunned as a whore, a man a fornicator or drug addict; even children born with the virus are often treated as dangerous health risks.
The government has officially condemned the prejudice, but in the absence of anti-discrimination laws, it persists. Mr Murphy showed me a menu from a Yangon restaurant that featured colourful images of dishes such as squid and prawn curries, and proclaimed that the food was free of hepatitis and HIV.
“What do you think that means?” he said. “It means they’re testing their staff. Can you get HIV from food handlers? No, and it’s not the law to test food handlers. But if you’re working somewhere and someone finds out you have HIV, you’ll lose your job probably. That’s the kind of thing we’re dealing with.”
Ko Yaza claims that in its early years the shelter experienced harassment from officials because of its link to the NLD. The officials exploited ignorance about HIV/AIDS and used it as a weapon.
“Many would come from far away to live near the shelter and officials would harass their landlords and spread false rumours,” Ko Yaza said. The officials would say that the patients were a dire health hazard and that the virus could be spread by mosquitoes and even by floodwaters, he said. Hospitals would turn away patients who sought admission while accompanied by NLD members. Ko Yaza and nine other shelter staff were once arrested on a range of charges and were accused of being communists because shelter’s documents featured the red ribbon, the international symbol of support and compassion for those with HIV/AIDs. When a visit in 2010 by NLD leader Daw Aung San Suu Kyi drew attention to the shelter, the centre’s permit was revoked and the altruistic project came close being shut down.
A report on the incident in The Irrawaddy magazine said township authorities later apologised and claimed they were acting on orders from high-ranking officials. Ko Yaza is convinced the former military regime regarded HIV/AIDS as a national embarrassment and conspired to stifle projects that focused attention on the disease.
When organisations involved in tackling HIV/AIDS began compiling estimates of the number of infected people, the government negotiated down the figure “as if it were a price,” he said.
The politics of AIDS
Mr Murphy doesn’t accept that part of the narrative.
The UNAIDS country manager suspects that antagonism towards the shelter was spawned at the grassroots level and not from the government. When the shelter was opened, the government cooperated with Daw Aung San Suu Kyi and foreign organisations to establish the Fund for HIV/AIDS in Myanmar, the country’s first major source of funding to combat the disease, said Mr Murphy.
But too often the government’s work was ignored and was the target of criticism for political reasons, he said.
“No matter what the government did, it was not enough and was criticised,” Mr Murphy said. “You think about positive reinforcement. The more you get criticised for something, the less you want to work on it. It becomes something you don’t want to talk about. It stigmatises the issue from a different angle,” he said.
The seeds planted during the military regime are beginning to bloom as the government increases spending on health. Although more work is needed to fight discrimination and stigma, access to treatment has soared in recent years as a result of increased public and donor resources, and the activities of NGOs such as MSF Holland, which treats about 30,000 HIV/AIDS patients throughout the country.
Yet the separation of politics and public health isn’t a simple matter for Daw Phyu Phyu Thin. In its early years, the shelter accepted any patient regardless of political affiliation, as well as soldiers and public servants. She says the shelter was determined to retain the reference to the NLD in its name, despite harassment, because the facility was a symbol of hope and change as well as providing an essential service. “We couldn’t take away the NLD name. It made us strong,” Daw Phyu Phyu Thin said.
She believes corruption and a dysfunctional bureaucracy continue to pose the greatest challenges to the national effort against HIV/AIDS. On paper, hospitals have adequate stocks of antiretroviral (ARV) drugs and other crucial medicines, but distributing them has been slow and inefficient. “There is so much medicine. But one day the Wairbargi hospital only gave 50 people medicine and there were so many people waiting,” Daw Phyu Phyu Thin said.
This is one reason why many of those with HIV/AIDS rely on services provided by NGOS and shelters such as those run by the NLD rather than the government’s healthcare system. Official figures show that in 2013, the Health Ministry spent about US$22 million on the campaign against HIV/AIDS. The next year the Global Fund to Fight AIDS, Tuberculosis and Malaria spent $141 million on the campaign.
Mr Murphy regards the government’s partnerships with NGOs and organisations such as the Global Fund as a mark of progress but Daw Phyu Phyu Thin worries that they are a symptom of government ineptitude.
Mr Murphy does not deny that Myanmar’s political system has work to do, but he emphasises that a successful battle against HIV has no place for old grudges and cheap shots in parliament. Tackling HIV is about the embracing things as they are, good and bad, with a shared goal of making life better for people with HIV.
“That’s what you should focus on,” Mr Murphy said. “Where are we going?”
One day at a time
Where Myanmar is going could be a place where facilities such as the shelters run by the NLD are no longer needed.
The provision of treatment and care for those with HIV/AIDS is becoming more decentralised as clinics open outside urban areas. Hopefully, as more people with HIV receive the treatment they need to settle back into ordinary life, the stigma will begin to ebb. There may come a time when no one with HIV/AIDS has to travel far from their homes to find treatment, and are not afraid to do so.
In the meantime, the NLD’s shelters are admitting a constant flow of patients. The two facilities accepted a total of 147 patients last month alone, and are finding it harder to meet the cost of care.
The NLD is taking on more projects and party resources are growing scarce. Daw Phyu Phyu Thin said the NLD will always stand by people with HIV; Daw Aung San Suu Kyi promised that when she visited the shelter in 2010. But each month the shelters rely a little more on private donors.
They are mostly ordinary people who give what they can, often to earn religious merit. A few thousand kyat, perhaps, or a box of instant noodles for the kitchen.
“This creates new challenges because we never drop patients,” Ko Yaza said, referring to a policy of never asking anyone to leave the shelters.
The patients help where they can, sharing their food and medicine money with each other, helping the volunteers with their work or caring for small children when their parents are sick.
Cooperation between staff and patients is one reason why the centres continue to operate. Ko Yaza is optimistic about the future. The shelter was recently given a large plot of land and he displayed an image of a big, modern building. It will replace both centres when it is built.
In the meantime, they still won’t turn anyone away.