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Stigma stalks Myanmar’s HIV patients despite advances in treatment


An HIV patient stares out of a window at an HIV hospice in Yangon’s South Dagon township. (Photo: Ei Cherry Aung/Myanmar Now)

An HIV patient stares out of a window at an HIV hospice in Yangon’s South Dagon township. (Photo: Ei Cherry Aung/Myanmar Now)

Two weeks after Cho’s husband died at his parent’s home in 2013, his family called her and told her he died of AIDS. She should get tested, they told her.

Cho, whose name has been changed to protect her identity, vividly remembers rushing to a clinic in sweltering heat to get a blood test. She breathed a sigh of relief when it came out negative.

But then she started losing weight and began falling ill more frequently. In September this year, Cho, who used to run a clothes stall at a neighbourhood market, went for another HIV test. It was positive.

“As soon as I found out I had HIV, I felt really sad as well as upset,” the 43-year-old told Myanmar Now, wiping away tears from her cheeks with the back of her hand.

Within two days, she had admitted herself to a clinic and hospice for HIV patients founded by a member of parliament from the National League for Democracy (NLD). Her family, who live in the impoverished Hlaing Thar Yar Township in Myanmar’s main city Yangon, did not want her to live with them.

Although the virus cannot be transmitted by day-to-day contact, they were worried that she would infect her younger sister’s child, so while they support her financially, they would rather she never came home, Cho said.

“My 21-year-old daughter has not come to visit me once since I arrived here, but at least she speaks to me on the phone, so it’s not bad,” she said.

The hospice is home to nearly 300 patients, many of whom have similar stories of rejection. 

Myanmar has one of the highest rates of HIV infection in Asia.  Under reforms by a semi-civilian government since 2011 it has made some progress in terms of access to medication compared to a few years ago, when cash-strapped clinics had to turn patients away.

Some 210,000 people in the country are living with HIV/AIDS, of whom around 160,000 need life-saving antiretroviral treatment (ART) based on the World Health Organization’s guidelines, according to Medecins Sans Frontieres (MSF).

No official data is available about the proportion of these patients with access to ART. The medical charity MSF, long the main provider of HIV treatment in the Southeast Asian nation, currently provides ART to 35,000 HIV patients, said a spokesperson for MSF in the main city Yangon. Treatment is also available at some state hospitals.

“Now you can get ART in government-run hospitals in many states and regions,” Soe Yadanar, a doctor with MSF, told Myanmar Now.

STIGMA REMAINS

Yet the stigma and discrimination faced by people living with HIV lingers in Myanmar, even as the world marks World AIDS Day on Dec. 1.

Ignorance and fear surrounding the HIV virus which causes AIDS are among the many challenges that will face Myanmar’s new government, elected on Nov. 8, in overhauling a neglected health system and changing attitudes formed by misinformation and a conservative culture. 

A 48-year-old mother from Ayeyarwady Region has a similar tale to Cho. She says her community shunned her family as soon as their HIV status came to light three years ago.

“Since I got HIV, nobody asked me to work at their homes anymore,” the woman, a slight day labourer who looks much older than her years, told Myanmar Now. She was at the clinic in Yangon to receive her monthly medicine.

She and her five-year-old son, who is also HIV positive, now survive on fruits and vegetables they have planted in their garden.

“Without a job, we don’t have money. Sometimes it’s really difficult to find food,” she said, her little boy sitting at her side.

 Like Cho, the woman only found out she and her son had HIV after her husband passed away and a friend who was worried about their health problems brought her to an international health organisation for a medical test.

The boy, who was just two when his father died, has little idea of what is going on except that he needs to take regular medication, the mother said. His friends at kindergarten seem to know, however.

 “My friends never asked me to join them when they’re playing. They stop playing if I’m included,” he said, eating a piece of bread.

The mother says she keeps her son with her as much as she can to ensure he takes his medication at the right time.

“I’m worried he would worsen if he makes a mistake about when to take the medicine. It’s important that our conditions don’t worsen because if anything happens, there’s nobody to look after us,” she said.  

MSF’s Soe Yadanar said much of the stigma and discrimination was linked to a lack of knowledge about HIV, and poor families not having anyone to care for people living with HIV.

“We’ve seen cases where if someone looking after a patient with HIV dies while the patient is unwell, other people don’t want to take care of the person with HIV anymore,” she said.

CHALLENGES

Soe Yadanar added that while access to ART is much easier these days, there are still challenges in delivering the treatment because of shortages of appropriate staff, especially doctors.

“On some days, patients had to wait for a whole day to see a doctor. When there are not enough doctors, the patients can’t explain their conditions in detail and the doctors can’t give the patients the care they need,” she said.

“People living with HIV tend to feel small so they need doctors and nurses who are able to reassure them. There needs to be enough people to take care of the needs of the patients properly,” she added.

For Cho, who is now on ART, taking care of her health and her diet is her focus. Yet she has no illusions that her siblings and daughter would ever accept her again.

“My daughter is worried that if she gets married, her husband would use my condition against her,” she said.

“So I think I’m going to spend whatever time that is left of my life in this hospice.”

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