This article is well done. Much better than most on the situation of people living with HIV in Myanmar.
It is true that in August 2002 there was little ART available even in Yangon and none in Loikaw when Taryar left. What proportion of ART is delivered outside of Yangon and Mandalay today?
I challenge any reader to send me a report of a single confirmed HIV transmission ever caused anywhere in the world through tattooing. Thirty million infection and not one caused through tattooing.
Jamie
++++++++++++++++++
HIV-positive, free from shame
Nyein Ei Ei Htwe
Myanmar Times
Monday, 24 November 2014
At first I didn’t want to share my scars, but now I want to tell you that my mother committed suicide three days after my husband died with HIV,” said Ma Yadanar (not her real name), looking away to a window in her office.
The 35-year-old, HIV-positive herself since 2007, described how her whole family – including herself and her mother and father – had contracted the virus, and how her mother feared death so much that she took her own life, leaving Ma Yadanar alone to care for her father, young daughter and six younger siblings. She thinks her father got HIV through a blood transfer in hospital during the surgical removal of his leg due to diabetes. Then, when her husband died, her employer fired her from her job at a gold shop and told her not to work anywhere else.
“He asked me if I had HIV, and I said yes. He gave me two months’ salary and ordered me not to work in gold shops, saying he could inform all the gold shops in Yangon,” she said, with a hurt smile.
According to UNAIDS, there are some 35.3 million people living with HIV all around the world. And while millions mark World AIDs Day on December 1, to celebrate advancements in treatment, speak out against discrimination of HIV-positive people and promote education about the disease, it’s worth reminding ourselves of the work to be done here at home.
As of 2013, there were roughly 185,000 people nationwide living with HIV, and in that year 6400 more were infected.
Though often found among prostitutes, drug-users and men who have sex with men (MSM), the virus also affects those who are teachers or doctors or lawyers – anyone who has sex, has a blood transfusion, gets a tattoo or is otherwise exposed to someone else’s blood may be at risk. And discrimination against and shaming of HIV-positive people combined with inadequate knowledge of the condition is killing individuals, putting stress on families and ultimately leading to more individuals contracting the virus.
To help combat that downward spiral, Ma Yadanar is now working for the Ratana Metta Organization for HIV reduction and human rights. She helps facilitate health-knowledge sharing among her HIV-positive peers, seeing her family’s previous lack of knowledge as partly responsible for the loss of her mother.
“My mother felt shame, and nobody knew about [our condition] except my mother and I. We didn’t speak of it even to my father and my husband,” she said.
Later, Ma Yadanar contracted tuberculosis, and she said she knew because a gland in her leg swelled and gave her pain. The swelling was so obvious that neighbours refused to speak to her and shunned her family.
“I was deadly sick and lying on my bed,” she said. “My father and all my family members felt shame and wouldn’t go out to face the strange looks we were getting.”
Finally, some friends brought good news of the availability of antiretroviral therapy (ART) for living with HIV. She went to the Yadana Metta clinic and has been taking the drugs – and living healthily – ever since.
Ma Yadanar wanted to get back out in public, to stare down those who shunned them and show her neighbours that she didn’t die like some people said she would. Caring for her family’s feelings, however, she relocated them all to a new home in North Dagon.
She also asked the clinic to give her a job sharing her knowledge, to help prevent more deaths like her mother’s.
“When the chair of the clinic accepted me, I was so happy,” she said.
Yet she has found that shame is extremely difficult for people to overcome. Some patients give wrong addresses, so clinic workers can never find them. And even friends and family who know what she’s been through still regard her as a criminal, she said.
“When guests come into the house while I am talking about HIV, I need to hide the books and medicines quickly and talk about other things,” she said.
At the clinic, Ma Yadanar educates patients about proper hygiene and the importance of taking meals and medicines on time. Sometimes she serves as a mediator between couples, families and neighbours.
“I can understand what they feel and think, so I explain by sharing my experiences,” she said.
Still, discrimination against HIV-positive people is rife and it’s losing them job opportunities, she said.
Taryar (not his real name) agreed. The 28-year-old identifies as a member of the gay community. He also has HIV, but he never appears sick and always flashes an attractive smile. He is a nutritionist for HIV-positive guests of the Drop-In Centre for HIV patients, where counselling is offered daily, 9am-5pm.
Working alongside doctors, Taryar manages patients’ daily food intake. He is happy with his job, but he often feels sad to think of his friends who have died with HIV.
“Most of my friends have already passed away because they thought living with HIV is very shameful,” he said. “When they found out the truth [about treatment], they were beyond curing.”
Taryar fleed from Yangon to Loikaw, Kayah State, when he was a young person to escape his family’s intolerant views about gay people.
Loikaw has a large gay community, but most had no knowledge of HIV or ART.
“We thought of it as a very shameful disease, and that we would die terribly,” he said. “We didn’t tell even our close friends or family.”
There was no treatment available in Loikaw, but ART drugs were available in Mandalay and Meiktila. Because patients must give their address and show National Registration Cards, however, most MSM didn’t go to clinics to get the free medicines, Taryar said.
When he returned to Yangon, he heard about the Drop-In Centre from friends and started to volunteer.
“I share my knowledge, as 90 percent of MSM are probably living with HIV,” he said. “It’s not a shameful disease, but you need courage to face it in time.”
Getting MSM to share knowledge is doubly difficult because many have not come out publicly as gay, which can be dangerous. As such, the centre has begun to offer a special program for homosexual people every Saturday.
Even among doctors, knowledge of how to deal with HIV patients is poor, as Ma La Min (not her real name) found out the day she went to her clinic to receive blood-test results.
“When the doctor who had checked my blood threw the result papers at my face, I knew I was positive,” she said.
It was August 18, 2002, she remembered. She left the clinic and tried to kill herself by walking in front of traffic near Sule Pagoda.
“There was no NGO then to help HIV-positive people, and we didn’t even know the word ART,” she said. “Now there is pre- and post-counselling, and there are places we can work.”
Now Ma La Min is assistant manager of an INGO that helps HIV positive people. After 12 years, however, she still hasn’t told her son she has HIV. She is concerned that the people in her neighbourhood don’t know enough about the virus not to look down on her family. For many, HIV is still synonymous with immoral behaviour.
“More than other people, we [HIV-positive people] can feel what other HIV people suffer, and we have more courage to face the problems,” Ma La Min said.
For the time being, she said, it’s best that those with HIV help and share knowledge among each other, where there can be real trust.
NGOs will host a World AIDS Day event on December 1 from 1pm to 5pm at Excel Tower, near Shwegondine Junction, Bahan. There will be an “edutainment” opera, a transgender “Miss” contest and a question-and-answer program. For more information, everyone is welcome to contact event organisers at 01-660948, 01-664352 or 09-73122566.
http://www.mmtimes.com/index.php/lifestyle/12366-hiv-positive-free-from-shame.html?start=1
