Excited for her unborn child, Ma Kay Khine (pseudonym), a young mother-to-be was living the life she always wanted, until the day she discovered that she had contracted HIV. It turned her life upside down overnight and fear took the main stage. She lost her first child to a miscarriage and, soon after, her husband fell severely ill from the HIV that he had initially transmitted to her. Devastated by this unruly turn of events, Ma Kay Khine lost all hope as to how to rebuild her life.
During this most difficult of times, instead of receiving the support she so desperately needed, she faced rejection and discrimination from everyone around her. Tears welled up in her eyes as she said, “My parents-in-law were very discriminating. When they learned that I had contracted HIV, they moved out and took everything with them. I was left with nothing, not even a single plate to eat from.” Ma Kay Khine never forgets this dark chapter of her life.
To add insult to injury, Ma Kay Khine was being ill-treated for doing all the right things a woman can do to save her family. She lost her job, her parents distanced themselves from her, and her loving husband - who vowed to take-care of her throughout
- was now bed-ridden and couldn’t support the family. With each passing day, the reality of life was taking its toll on Ma Kay Khine’s mental and physical wellbeing. Not long after, Ma Kay Khine’s in-laws cut the cord with her just as her husband’s condition became more severe. She had to take care of her husband during the day and then work an evening-shift job as an assistant in a printing shop to earn money and put food on the table for her family. “I don’t want to think about the bitterness of my past,” she says as she tries to block out the painful memories.
“Post-diagnosis, my whole world came crashing down around me. It’s frightening to look back.”
The challenges of living a life with HIV are not much different from one person to another. In a similar fate, Ma Moe Moe (pseudonym) was also unable to avoid contracting HIV. Like many youngsters, she had a dream of becoming a doctor, but she later realized that not all dreams come true. At just 18 years old, she started to work as a prostitute to support her family due to a scarcity of other well-paid employment. The eldest among four siblings, she was the sole breadwinner of the family. She sacrificed her mental and physically wellbeing, pushing herself to the limits, in order to try and give a better future to her younger siblings.
Then in 2002, she fell in love with her partner who pulled her out of prostitution and with whom she intended to start a family together. After years of suffering, Ma Moe Moe finally felt happy and optimistic about the future. She was ready to embrace a hopeful new life when a simple blood test would put an end to that: she was HIV positive. “It was as though my soul just left my body. I was no longer conscious of what I was doing. One time, I just stepped out onto the main road into oncoming traffic, and I would have died if my partner didn’t reach out and pull me back,” said Ma Moe Moe as she recalled the time when she first found out she had HIV. She remembers her hands physically shaking when she collected her diagnosis report at a private clinic in the city. She hoped someone would comfort her and tell her everything was going to be alright, but that person never came. She neither got the chance, nor had the confidence, to ask about the disease and was left with no support during that most difficult phase of her life. Out of fear, she began to isolate herself from others and this ended up increasing her pain and suffering. Combined with a lack of knowledge about HIV, she began to be consumed by negative thoughts and paranoia set in: she started using separate dishes, cups, clothing and totally shut herself off from the outside world, away from any kind of affection and love.
Just like Ma Kay Khine and Ma Moe Moe, who are both women, those who have diverse gender orientation and dress like women also face the same discrimination.
Another instance is the story of Ma Nwe Ni (pseudonym), a transgender woman who, as the oldest sibling, has been financially supporting her family since she was 19 years old. Aside from being criticized by society for being a transgender woman, she has also unfairly been given a reputation in her community as a wrongdoer. “There is always talk in the community. Some people even think that I am a murderer,” said Ma Nwe Ni, recalling her experience.
People tend to forget that people living with HIV (PLHIV) are also human-beings living in the same world as everyone else, one in which everyone survives with support from another. Pre-conceived notions and limited knowledge on the transmission of HIV, together with fear of being infected and a misconception that those who have contracted HIV are immoral, are the underlying reasons of discrimination towards those who have HIV/AIDS. This sheds a light on the need for more public awareness and education regarding this topic.
Figures show that approximately 240,000 people in Myanmar are living with HIV. According to the National AIDS Programme (NAP) of the Ministry of Health and Sports, approximately 11,000 newly infected cases were reported in 2019. Despite educational programs on HIV having been provided for over 20 years now, the yearly infection rate still stands tall at over ten thousand people.
“We have been conducting a lot of educational programs but it’s never enough. People understand about general health, but they still lack proper knowledge when it comes to HIV,” said Dr. Htun Nyunt Oo, Director of NAP, Ministry of Health and Sports.
That is why Ma Kay Khine, Ma Moe Moe, and Ma Nwe Ni all faced such intense discrimination during that era when HIV was highly stigmatized and nobody wanted to associate themselves with any kind of discussion related with the virus. As a result of such inadequate public information, many people are unable to discern HIV from AIDS, thinking both to be one and the same.
When infected by HIV, oftentimes, the family of the person infected feel as if their entire world has fallen apart and that their lives have been ruined at the thought of being criticized by people in their community and socially rejected. Most people have it ingrained in their heads that people with HIV have bad characters. With the notion that HIV is something to be embarrassed about, those with HIV haven’t been able to open up about their condition. In addition to being ostracized from society, there are those who have also lost their loved ones from the virus and those who have given up any hope of having children.
To overcome this fear and show that we care for PLHIV would take a massive transformation of the way all of us think – we need to try and empathize with their pain, anxiety and insecurities and at least be non-judgmental. And for that, we need to understand the concept and medical theory behind the HIV prevention program which controls the sexual transmission of HIV through ART (Antiretroviral Therapy) treatment.
With the advancement of modern technology, ART medication has improved over the last few years. In the past, due to a shortage of the drug, access to ART was limited to only those with a low CD4. These days, however, an increase in government spending on HIV treatment as well as international funding support have made it possible for PLHIV to receive free ART treatment as soon as they become aware of their HIV status.
As international research findings show, if taken regularly by PLHIV, ART medication has the ability to suppress their viral load to such an extent that will allow them to have sexual relations where the risk of transmitting HIV becomes almost negligible.
This information has been regarded as “Undetectable = Untransmittable” (U = U) across the world. In Myanmar, the Ministry of Health and Sports and ICAP at Columbia University have been leading a social media campaign called “I Will Move On U=U” with funding from the US-based PEPFAR (President’s Emergency Plan for AIDS Relief).
“U = U” stands for Undetectable equals Untransmittable and the campaign advocates a message that when one adheres to ART medication, their HIV viral load becomes so low that it can no longer be detected by a blood test. When their HIV viral load is no longer detectable, their chance of transmitting HIV to people whom they have sex with is practically nonexistent.
Commenting on this initiative, ICAP Country Director Dr. Khin Nyein Chan said, “Our aim is to convey the message that PLHIV can now live a normal life the same as those without HIV.”
ICAP at Columbia University began its partnership with the Government of Myanmar in 2014 to support the national response to HIV and is providing technical assistance and implementation support at all levels to Myanmar’s healthcare system to expedite the HIV patient care services in the country.
“The aims of ‘I Will Move On U = U’ campaign are to urge early testing, the taking of ART medication, adhering to the treatment, and also to fight against the social stigma and discrimination towards PLHIV,” says the campaign organizers.
The state of U=U does not mean the patient is cured from HIV but rather the viral load in their body is reduced to a point where it is no longer detectable. If they take their ART medication as prescribed by their doctor, it will immensely decrease the risk of them infecting their sexual partners.
“HIV must be prevented. First you need to check whether you have contracted the HIV virus or not, then if you do happen to have the virus, treatment is the main priority. In other words, taking medicine is not only about protecting you but also protecting those around you. Only by suppressing the viral load with medical treatment can you prevent the spread of this virus,” said Dr. Khin Nyein Chan.
Despite the criticism and discrimination they faced, Ma Kay Khine, Ma Moe Moe, and Ma Nwe Ni have been taking their ART medication consistently and as a result have successfully pulled themselves out of the dark spiral of HIV and now live normal and healthy lives.
Ma Kay Khine started using ART medication in 2013 and has since given birth to a beautiful child who was not infected by HIV at all. Her husband has also been taking medication so that he can be healthy and capable of supporting his family again, while Ma Kay Khine has been working for the Myanmar Positive Group which helps people like her who are living with HIV.
Similarly, Ma Moe Moe has also taken ART since 2008. She is now working as a community worker mentor at Médecins du Monde – MDM, where she shares knowledge about HIV to those who are living with the virus.
“Although I did not achieve my goal of becoming a doctor, I get to impart meaningful and important health education. Taking ART medication has improved my quality of life by giving me the ability to live a normal and healthy existence even while being infected with HIV,” said Ma Moe Moe.
Ma Nwe Ni has also been taking ART medication regularly are early as 2006. She was so determined to take the treatment properly that she set reminder alarms on her phone to ensure she would never miss a dose. Ma Nwe Ni is now a defender for HIV patients in their fight to get the safety and security they deserve.
“I value the medicine I am taking and I take it consistently. I also make sure to get a blood test every 6 months,” said Ma Nwe Ni.
The journey they have made has realized for them that life is for living, not for losing. They are all HIV survivors and symbols of strength and courage. With ART treatment and support from social groups, they wake up every day with the goal of making life better than the day before. They say with affirmation that “HIV is not a death sentence and we can all live a healthy, strong and purposeful life.”
Despite having HIV in their bodies, they are in U=U state where the viral load is no longer detectable because they take their ART medication regularly. Although they have HIV, they are able to live normal lives the same as anyone else.
For people living with HIV to be able to pull themselves out of the grip of the disease, support from their community and equality in social matters, education and business is crucial.
Ma Kay Khine, who started by taking her first step to pull herself out of the fear of HIV, spread this message to people who are in the same situation that she was.
"Speaking from personal experience, you can live a full life span if you take ART medicine regularly. Your health will improve immensely, allowing you to do your daily activities and accomplish your long-term goals. The most important thing is to just take your medication regularly and consistently.”