Only Sickest HIV Patients in Burma Get Drugs
By Margie Mason 22 October 2012
RANGOON—Thein Aung has been trained not to show weakness, but he’s convinced no soldier is strong enough for this.
He clenches his jaw and pauses, trying to will his chin to stop quivering and his eyes not to blink. But he’s like a mountain that is crumbling. His shoulders shake, then collapse inward, and he suddenly seems small in the denim Wrangler shirt that’s rolled up to his elbows and hanging loosely off his skinny arms. Big tears drip from his reddened eyes, and he looks away, ashamed.
As he sits outside a crowded clinic on the outskirts of Burma’s biggest city, he knows his body is struggling to fight HIV, tuberculosis and diabetes—but he can’t help wishing he was sicker.
Although Thein Aung is ill enough to qualify for HIV treatment in other poor countries, there are simply not enough pills in Burma. Only the sickest of the sick are lucky enough to go home with lifesaving medicine here. The others soon learn their fate is ultimately decided by the number of infection-fighting cells found inside the blood samples they give every three months.
The World Health Organization recommends treatment start when this all-important CD4 count drops to 350.
In Burma, it must fall below 150.
Antiretroviral therapy, in the past considered a miracle only available to HIV patients in the West, is no longer scarce in many of the poorest parts of the world. Pills are cheaper and easier to access, and HIV is not the same killer that once left thousands of orphaned children in sub-Saharan Africa.
But Burma, officially known as Myanmar, remains a special case. Kept in the dark for so many decades by its reclusive ruling junta, this country of 60 million did not reap the same international aid as other needy nations.
Heavy economic sanctions levied by countries such as the United States, along with virtually nonexistent government health funding, left an empty hole for medicine and services. Today, Burma is among the hardest places to get HIV care, and health experts warn it will take years to prop up a broken health system hobbled by decades of neglect.
“Burma is like the work that I did in Africa in the 90s. It’s 15, 20 years out of date,” says Dr. Chris Beyrer, an HIV expert at Johns Hopkins University who has worked in Burma for years. “If you actually tried to treat AIDS, you’d have to say that everybody with every other condition is going to die unless there are more resources.”
Of the estimated 240,000 people living with HIV, half are going without treatment. And some 18,000 people die from the disease every year, according to UNAIDS.
The problem worsened last year after the Global Fund to Fight AIDS, Tuberculosis and Malaria canceled a round of funding due to a lack of international donations. The money was expected to provide HIV drugs for 46,500 people.
But as Burma wows the world with its reforms, the US and other nations are easing sanctions. The Global Fund recently urged Burma to apply for more assistance that would make up the shortfall and open the door for HIV drugs to reach more than 75 percent of those in need by the end of 2015. It would also fight tuberculosis, a major killer of HIV patients. TB in Burma is at nearly triple the global rate as multi-drug resistant forms of the disease surge.
The aid group Doctors Without Borders has tried to take up the slack by providing more than half the HIV drugs being distributed. But every day, physicians at its 23 clinics must make agonizing decisions to turn away patients like Thein Aung, who are desperately ill but still do not qualify for medicine because their CD4 counts are too high.
“It’s very difficult to see those kind of situations,” says Kyaw Naing Htun, a young doctor with a K-pop hairstyle and seemingly endless energy, who manages the organization’s busy clinic in Insein. He says around 100 patients who should be on drugs are turned away every month in Rangoon alone. “It takes a lot more resources when they come back sicker. It’s a lose-lose game.”
Thein Aung first learned about the virus living inside him in April. He had dropped weight and wasn’t sleeping well, but figured it was the TB and diabetes running him down.
When the test came back positive for HIV, he was shocked and scared: How? Why?
“I wanted to commit suicide when I found out the results,” he says softly, looking away. “What upset me most was my wife. She says I shouldn’t die now because we have children.”
The questions swarmed and consumed him, followed by a flood of worry and guilt that he had possibly infected his spouse. Then the bigger concern: What’s next?
Unlike many living in a country closed off to the world for the past half-century of military rule, Thein Aung, an army staff sergeant, had some firsthand knowledge about HIV.
He had watched the disease rot one soldier from the inside out, punishing him with a cruel death. But he also saw another get on treatment and live a normal life, despite being kicked out by the military.
With the images of those two men locked in his head, Thein Aung decided to fight to save himself and ultimately his family. No one but his wife could know, or he would lose his job and their home on the military base because of the deep fear and discrimination surrounding the disease. Drugs were his only chance to keep the secret.
“If I get the medicine, and I can stay in this life longer, I will serve the country more and my family will not be broken,” he says. “My family is invaluable.”
At the clinic in Insein, an area of Rangoon better known for its notorious prison, Thein Aung, who is using a pseudonym to protect his identity, waited nervously for the results of his first blood test.
CD4 count: 460. Low enough for drugs in the US, but well above the 150 cutoff in Burma. He was given TB medication and told to come back in three months.
Many of the 200 people crammed into the two small buildings of an HIV center just outside Rangoon are simply waiting to die.
Beloved opposition leader Aung San Suu Kyi visited patients there in November 2010, just days after being freed from house arrest, appealing to the world for more medicine. She also spoke passionately in July about the stigma of HIV via a video link to the International AIDS conference in Washington, saying, “Our people need to understand what HIV really is. We need to understand this is not something that we need to be afraid of.”
There are no doctors or nurses stationed at the hospice supported by Suu Kyi’s National League for Democracy party, forcing patients to care for each other. One man hangs a drip bag on a plastic string from the ceiling over an emaciated body. Other caregivers—many of whom are also infected—wave paper fans beside their loved ones for hours, providing the only relief they can offer.
Infected children whose parents have already died play barefoot in the stuffy, crowded rooms. Bodies, some nothing more than breathing corpses, are stacked side by side on bamboo slats above dirt floors.
Another room is packed with 20 women stretched out on straw mats crisscrossing the wooden floor. A young mother sobs in one corner as she breast-feeds a seven-day-old baby girl. She did not take HIV drugs until late in her pregnancy, and now must wait up to 18 months to know for sure whether her only child is infected.
“The funding is limited for the enormous number of patients,” says newly elected Parliament member Phyu Phyu Thin, who founded the center in 2002 and was jailed by the former government for her HIV work. “Waiting to get the medicine under the limits is too risky for many patients because they can only get it when their health is deteriorating.”
Thein Aung looks the part of a soldier with his shaved head and wiry build. He spent the first decade of his 27 years in the military fighting in domestic ethnic wars, away from his wife and two children.
It’s this past life that devours him each night when sleep refuses to come. He served as a medic then, and regularly came into contact with the blood of wounded soldiers. He also had sex with other women. The question that haunts him most is, which one is to blame? He’ll never know.
He takes sleeping pills every night to be released from these thoughts. But relief does not come, as chills and night sweats drench his body and the constant urge to urinate keeps him running to the toilet.
He’s lost 10 pounds in the past month, dropping from 130 pounds to 120. His cheeks are starting to sink, and his eyes look hollow. His strength is also fading, and he can no longer lead grueling daily runs with the trainees. He uses his TB as an excuse, but he fears his superiors will not be fooled much longer.
“I try to hide it as much as I can, but some people have started rumors about me, so I try not to face them directly,” he says. “I want to be strong like the other people. I’m trying, but now my body cannot follow my mind.”
His wife refuses to be tested until Thein Aung gets on the drugs. She worries if she comes back positive, her guilt-ravaged husband will kill himself.
“She doesn’t want me to be depressed,” he says. “If she is positive, I will be very, very depressed.”
The disease has forced him to rethink who he is. He’s killed people in combat, cheated on his wife and witnessed many horrors in his lifetime. But he wants a chance to make up for his wrongs.
As a Buddhist, he believes his disease is a punishment for misdeeds in a previous life. He vows to be a better man by helping others and giving what little he has to charity.
He says sicker patients deserve treatment first. Still, as he sits waiting for his second blood test, he can’t help wishing his immune system was weak enough to help him reach the magic number.
But when the doctor reads his results, he knows he will leave empty-handed again.
CD4 count: 289. Still too high.
His only choice is to try again in three months, hoping he’ll be sick enough then.