by Benjamin Law
‘Their reaction was good,’ he said. ‘They take care of me. But they don’t want me to be MSM.’
I laughed. ‘So they’re okay with you having HIV, but they’re not okay with you being an MSM.’
He laughed too. ‘Yes,’ he said.
Timing was on his side, though. Zin Min Htet looked healthy, and the ART treatment meant his risk of developing AIDS or another opportunistic infection had greatly receded. He was sure he could get another job.
‘What would have happened if you hadn’t been able to transfer to Yangon in the first place?’ I asked.
‘I think I was dead!’ He laughed, trailed off, then stopped altogether. ‘Dead by now,’ he said, sombrely.
In his new role working for the International HIV/AIDS Alliance, Zin Min Htet was acutely aware that thousands of people in Myanmar needed ARTs. Some were on waiting lists for the medication – a life-or-death wait – while others didn’t even know they needed it. Zin Min Htet would live, but he knew many others would die, especially if they lived outside the city centre.
I caught a flight to Mandalay, where I’d been told the availability of ARTs was far worse than in Yangon. It was in Mandalay that I met Than Win. Even though Than Win’s birth certificate said she was a 22-year-old man, she was apwint and looked more like a fifteen-year-old girl. She was wide-eyed as a calf and kept her wavy, bob-length hair in metal clips like a children’s book character.
Than Win lived in a town whose name roughly translated to ‘Mandalay New Town’, a ninety-minute bus trip from Mandalay, although it could take much longer since ‘buses’ in this region were covered utility trucks, which carted produce and sometimes livestock, as well as human passengers. Mandalay New Town wasn’t too different from Mandalay itself: wide streets, lots of motorcycles and exposed holes in cement drains covered by wooden slats, with poorer people bathing in the public ablution stations on street corners. The summers were scorching; the rainy seasons muggy and plagued with mosquitoes.
Despite her youth and beauty, Than Win had the gnarled frame of an elderly woman. Her skin was patchy and dry. The fingernails of one hand were painted a purply pink, but the polish was flaking off. She found it difficult to maintain eye contact, saying she felt ashamed of what she was telling me. She had big eyes full of trauma, like a Disney-cartoon fawn that had accidentally wandered into a horror film.
Until recently, Than Win had been a full-time sex worker, working seven nights a week. She’d left school after fourth standard, and you needed to finish tenth standard to qualify for a semi-decent job. During the day, Than Win helped out her family in the cramped home they shared: Than Win, her grandmother, two parents, four brothers and Than Win’s husband – nine people in one house. Living in such close confines was difficult on a practical level, and her relationship with her family was already tense. They knew what Than Win did for work at night and hated it.
‘Don’t do that!’ her family would say. ‘It’s not good for your health!’
Than Win’s family hated her construction-worker husband even more. He would accompany Than Win to score her clients and ensure she got home safely. When Than Win and her husband returned home after a long night’s work, they would often find her family had locked them out. They got used to sleeping in the detached room outside.
After a few years, the family’s objections quietened down. They realised they couldn’t stop Than Win by locking her out. Plus, they were getting money from Than Win, and money was the one thing you couldn’t argue with in this country. When business was good, Than Win earned 10,000 kyats in a night (thirteen US dollars), which exceeded the salaries of some professionals in downtown Mandalay.
Her family was right about her health, though. Two years earlier, Than Win had discovered genital warts on her anus, which made her wonder what other horrors were lurking undetected inside her body. Blood tests at Marie Stopes International came back positive for HIV. Than Win was stunned.
She spent days crying her guts out, and her lack of appetite meant she rapidly lost weight. When I asked Than Win whether she knew how she’d caught HIV, she bowed her head.
‘I’m pretty sure I got HIV from unprotected anal sex,’ she said.
She was one of the many sex workers who knew it was risky not to use a condom, but whose clients often refused to wear one. When your client said no, you weren’t in a strong position to convince them otherwise.
‘I had to obey,’ Than Win said quietly.
When I asked her how often she had unprotected sex with clients, she looked past me.
‘Many, many, many times,’ she said.
Two of Than Win’s uncles had also been HIV-positive, and she had watched one of them die from AIDS-related complications. One uncle had contracted HIV from his wife, who was also a sex worker. The other uncle got HIV from having unprotected sex with men. Shortly after Than Win was diagnosed, she watched that uncle’s body crumple, buckle and sag, before completely breaking down. Over months, Than Win saw firsthand how the virus scooped out his immune system and left him completely vulnerable to disease, before a mysterious illness devoured his body.
Than Win kept thinking, This is going to happen to me. This is going to happen to me. This is going to happen to me.
It was not a dignified death. In his final days, he lost control of his bowels and had unstoppable diarrhoea, leaking watery shit into the bed. The odour was unbearable and living in such tight confines meant there was no escape from it. It was literally the smell of death.
It was only in the final stages that the family took Than Win’s uncle to hospital, because the expense of admission could financially cripple them. By then, it was too late for ARTs: his CD4 count was almost non-existent. He died staining the sheets and smelling of evil. For Than Win, this was HIV’s ghastly end point: someone moaning for death and covered in their own filth. It was a glimpse into her future unless she did something soon. After her uncle died and they left the hospital together, Than Win’s grandmother scolded her and wailed.
‘You’ve just seen your uncle die like this!’ she said. ‘Now you see why you must take care of your own health!’
The words felt like a curse: Than Win immediately started to feel sick. For years, she had been self-prescribing female hormones to enlarge her breasts and the meds had made her feel lethargic. This was different.
It wasn’t long before Than Win was diagnosed with tuberculosis, that common opportunistic infection. Mandalay’s NGOs weren’t well-equipped to provide ARTs, but they could handle TB at least. But as soon as it had cleared up, Than Win was diagnosed with hepatitis B, and had since developed liver psoriasis as a result. At the age of twenty-two, her body felt like a leaky boat that needed constant maintenance.
Than Win found a community-based organisation that educated her about ARTs. But the clinics that monitored CD4 counts and provided ARTs were all based in the heart of Mandalay and weren’t as well-stocked as those in Yangon. To get to Mandalay, Than Win had to take two buses. Not only did the travel take time, but she was also the object of unwanted attention from people on the buses because of her apwint appearance.
‘Look at me, I’m obviously different,’ she said. ‘So when I venture into public – on the bus, in the crowds – I don’t really feel comfortable.’
She persevered. Getting onto ARTs required attending mandatory counselling sessions intended to provide emotional support, but also to gauge how committed the recipient would be to the medication. No NGO or clinic wanted to waste their limited resources.
Moving to Mandalay’s city centre wasn’t an option for Than Win. She was annoyed that the government couldn’t provide the drugs to keep her alive in her hometown, but she didn’t expect the situation to change anytime soon. Talking about this was one of the rare times when she looked angry.
‘This kind of convenience is not going to happen,’ she said. ‘I don’t think anyone would be able to expect that for years.’
Than Win knew only a minority of HIV-positiv
e people in Myanmar got ARTs, so she monitored her CD4 levels closely. When I met her, she was within the 500–700 range, which was relatively high for someone with HIV. Her CD4 count would have to be lower – between 250 and 300 – to qualify for ARTs, but some people with CD4 counts that low still didn’t get treatment. If stocks were low that season, only people with opportunistic infections would be placed on the ART list. Than Win had even heard of some people trying to get tuberculosis so that doctors would give them priority.
While she waited for ARTs, Than Win was taking powerful antibiotics to treat her pneumocystis pneumonia, another opportunistic infection. Her rattling cough kept her up at night, disturbing her sleep patterns and depleting her appetite. She was so weak that she’d sometimes fall asleep in the middle of conversations. She had quit sex work because of her health, so had no income. Her family still disapproved of her. And there was the looming – and very real – threat that she would never get the drugs she needed to stay alive.
‘ART is my major necessity,’ Than Win said. ‘It’s the only hope and ultimate goal right now. Nothing else.’
On the buses between her hometown and Mandalay, Than Win had time to daydream. She didn’t let her imagination roam far. All she desired was someone in her life to take care of her once she got on ARTs, to remind her to take them and be there when the intense side effects kicked in. Than Win told me that in one Mandalay clinic, she saw an HIV-positive little boy who was starting his course. He must have contracted HIV in the womb, because his mother was nowhere to be seen. His grandmother was taking care of him instead.
‘I want someone like that grandmother,’ Than Win said.
I didn’t want to point out to Than Win that she already had a grandmother. If she thought her grandmother could be that person for her, I figured she would have said so. Than Win didn’t mention her husband either, or her parents or her siblings. Despite being surrounded by people, she felt she had no one.
Than Win had an unshakable belief that she’d get ARTs when she needed them. She was travelling so often between her hometown and Mandalay’s International Health Care clinic that she had become confident that she’d get to the front of the queue when the time came. She was a familiar face to the staff, and surely that counted for something. Her advantage was the fact that there weren’t many people in Myanmar educated enough even to know about the ARTs – people like her uncle. After watching her uncle die, Than Win had made travelling into Mandalay her top priority, no matter how much time it took. Beyond that, all Than Win could do was wait. When I asked her where she saw herself in ten years (I had to keep reminding myself she was only twenty-two), she shrugged.
‘Thinking about the future is hard,’ she said. ‘And to be completely honest, I’m not sure I’ll make it to thirty-two.’
If you were a man who fucked men and lived in Asia, your risk of getting HIV was 18.7 times higher than the rest of the population. If you were an MSM from Myanmar, that risk became forty-two times greater. Some UNAIDS estimates suggested that by 2008, nearly a third of MSM and transgender people in Myanmar had HIV. No other nation in the region even came close to those figures. Something had gone terribly wrong in Myanmar.
If you were HIV-positive in Myanmar, your future was cloudy at best. Most information about HIV was passed by word of mouth, and that information varied from unreliable to downright lies. Hardly anyone had internet access, and NGOs and HIV clinics in Myanmar didn’t have a web presence anyway. Many GPs didn’t know where or how to refer people to HIV clinics.
One afternoon, I joined the organisation PSI in the middle of a training session for GPs from all over Myanmar to learn the fundamentals of HIV: the causes, the symptoms, the treatment. We were gathered in a tidy, air-conditioned hotel conference room with fifteen doctors, most in their forties or fifties. HIV experts led us through powerpoint slides showing the clinical stages of HIV and symptoms such as mucous, lesions and weight loss. We were treated to searingly unpleasant slides of gingivitis and other possible complications of HIV with horrible names like recurrent severe pneumonia cryptococcal meningitis, toxoplasmosis, chronic herpes simplex and something terrible called HIV wasting. An information sheet we’d been given showcased graphic photos and details of ulcers, skin conditions and something called ‘crust formation’. On the information sheet was the motto, ‘None shall be denied.’
Some of these doctors had been practising medicine for years, others for decades. To start with, it was heartening to see them learning this information. Eventually, though, I also felt like screaming at them: YOU ARE DOCTORS! Shouldn’t you know this already?
Meanwhile, the NGOs struggled. National ART coverage was patchy, and in some places non-existent. MSF Holland’s Thazin clinics provided the majority of Myanmar’s ART treatments, addressing the needs of around 20,000 patients every year, mainly in Yangon. But in 2008, these Yangon clinics were forced to freeze services to all new patients. In a newspaper interview, one executive director of Médecins Sans Frontières described their operations as ‘a desperate form of triage’. Every month, doctors were forced to turn away around 240 new HIV-positive people who came to the Yangon clinics seeking help. It didn’t matter that these people had CD4 counts that, according to World Health Organization standards, desperately warranted treatment. The clinics had to give priority to the sickest patients, those with a CD4 count of less than 100 – patients who now, technically, had full-blown AIDS. Many died before the treatment could take effect, which amounted to more waste. Although MSF had resumed taking new patients by the time I arrived, it was probable that hundreds – perhaps thousands – of people had died waiting for ARTs.
In the year MSF started turning away patients, the organisation released a public report called A Preventable Fate: The Failure of ART Scale-up in Myanmar. In it, MSF was blunt, describing the HIV situation in Myanmar as ‘critical’ and, more provocatively, blaming the Burmese government for its lack of support. ‘The response of both the Government of Myanmar and the international community has remained minimal,’ they said. ‘MSF should not bear the main responsibility for one of Asia’s most serious HIV/AIDS epidemics.’
The report shocked many Burmese with its bluntness. Hardly anyone dared to speak about the government, which people sometimes referred to simply as the ‘G’. People danced carefully around the topic, because they never knew who was listening. It was why they referred to Aung San Suu Kyi as ‘The Lady’, or talked about journalists as ‘Js’ and politicians as ‘Ps’. You spoke in code because people in Myanmar liked to listen in, often out of benign curiosity, but sometimes for more sinister reasons. Markus Buhler, who worked at UNAIDS, said the relationship between the Burmese government and NGO groups had always been complicated and tense.
‘It’s seen with suspicion by authorities,’ Markus said.
‘Anything grassroots, huh?’ I said.
‘Anything grassroots,’ he said.
Another NGO worker told me, ‘If you’re not careful, they’ll force you to stop. And if they really have an issue with the work, you’ll get arrested.’
Most people agreed that addressing health in general – let alone HIV – was low on the Burmese government’s list of priorities. Kyaw Myint said that the only reason the government engaged with HIV was to improve how Myanmar was seen internationally. The government was disseminating some educational information, Markus said, but that was mainly for show.
‘They’re doing just enough.’
Habib Rahman, director of PSI’s Top Centre, thought this paranoia was over the top. A bald, no-nonsense Bangladeshi guy, Habib said it really wasn’t so bad.
‘Look, dealing with the government, dealing with local authorities, you need to be a little bit careful,’ he said. ‘That is fine. But I can tell you a few things: we are working since 2004 in nineteen cities and have 350 staff. We’ve never faced any major problems from the government. In many ways, they are very supportive. We don’t want financial support from the government. We are not for
that. But what we wish – or what we want – is that they will not stop us for anything; they will not prevent us for anything. And I think that this enough.’
As long as the government stayed out of their way, PSI was happy. Habib hadn’t seen any cases where NGOs working in HIV or with MSMs had run into trouble.
‘No, no,’ Habib assured me. ‘People think like that, but it’s really not happening.’
Outside Yangon, though, the story was different. Regional government officials who acted as gatekeepers for HIV community groups could be horrible to deal with, but in unexpected ways. One HIV organisation in Mandalay spoke to me, on condition of anonymity, after being blacklisted by one such official for not complying with his outrageous personal demands.
The organisation, which I’ll call Assist, provided education on HIV and home-based care for those already infected. Assist’s head, whom I’ll call Lo-Lo, was so scared of retribution that he refused to let me visit their headquarters.
‘Benjamin, it is impossible for us to bring you to our office due to those sensitivities,’ he said on the phone. ‘Because to host a foreigner like you, we have to report a full itinerary. We would risk shutting down our CBO [community-based organisation], because of this regional official – that’s one reason. The bullshit regulations are another. That’s why, instead of visiting us, we will visit you. For us to deny you to come to our office is, for us, quite tragic.’
We met in the lobby of my Mandalay hostel. They were quite a sight: plump Lo-Lo and his four Assist colleagues, all MSMs, some in loud outfits and one wearing sunglasses indoors. Some of them were HIV-positive, Lo-Lo explained. When I delicately asked who in particular was, Lo-Lo laughed.
‘He and he is HIV-positive,’ he said, pointing at two of the men. ‘But these two,’ he added, pointing to the other two, ‘are very potential.’
Everyone laughed. Maybe I’d been in Myanmar for too long, but I laughed as well.