Gaysia (32 page)

‘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-positive 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.