Lashio, Shan State
Nge Nge*, 13, and her father U Maung Oo*, 58, tested positive for HIV in 2007. They are both on antiretroviral treatment, but the father’s job can prevent them from getting to the clinic to pick up their drugs. “I am working on construction sites. This demanding job stopped us from visiting the clinic,” says U Maung Oo.
After not coming to the clinic for eight months, U Maung Oo was diagnosed with TB while his daughter was diagnosed with CMV retinitis. Although she is not herself infected with TB, when she is in the clinic’s TB zone, she has to wear a mask. “I can’t breathe with it. I hate it” she says.
Nge Nge, 13 & U Maung Oo, 58 (*Names have been changed)
Dawei, Tanynthari Region
“I have been working with MSF since 2012, since finding out that I was HIV-positive. At that time, I lived with my mother and my brothers, who didn’t like my transgender life.
They always teased me, saying things like, ‘Why are you wearing girls’ clothes?’ They even destroyed my women’s accessories and tried to make me act like a man. But I always had the feeling that I was a girl. I felt a lot of pressure from them and I tried to escape from home. During that time I just felt like I was sitting alone in a dark room without anyone helping me.
After trying very hard to change the perception of transgender in my family and also in my neighbourhood, I got more understanding from them.
I studied Law at university but I have not finished yet. My dream is to become a judge to get the authorities to hear and decide cases in court. Now I am working for MSF as a data entry operator and during my free time I’m also a make-up artist. My brothers are now supporting me and sometimes they even give me for beauty advice.”
Ye Myo Oo, 31
Muse, Shan State
Dr San Jay, who works in MSF’s Muse clinic, explains the geographical complexity of Muse.
Muse is located in northern Shan State, near the border with China, and receives not only patients from the area and surrounding Shan mountains, but also those from the non government-controlled areas of Kachin State. Although MSF also runs clinics in Kachin State, the ongoing conflict in in the area, as well as the natural barrier of the mountains, means that the fastest, easiest and safest way to receive medical assistance is to cross through China to Shan State.
Dr San Jay
Muse, Shan State
Lu Sam is a 33-year-old Kachin woman from a village near Nam Kham. To escape the war, she fled the village in April 2014 with her husband and four children. They settled in a camp for displaced people. After Lu Sam discovered she had tuberculosis, she began treatment, but failed to recover. Results of further tests showed that she had multidrug-resistant
tuberculosis (MDR-TB). “It was the darkest time of my life,” says Lu Sam. “My husband didn’t support or take care of me. I was totally left alone. I decided to get divorced when I found out that I had MDR-TB.”
An MSF team running a mobile clinic in the camp offered her a solution. “They asked me to come and stay in Muse for a 20-month course of treatment,” says Lu Sam. “I only have five months left now before completing my treatment. I have two boys and two girls and only two of them have visited me since I arrived here. I don’t know what I will do after I have finished treatment. I am thinking of going to China to work but I don’t speak Chinese. More importantly I may not have a chance to see my children if I go there. I don’t want to go back to my village either, because I don’t want to meet my ex-husband. I know I have to decide something soon but I am still lost and confused.”
Lu Sam, 33
Lahe, Naga self-administrated Zone, Sagaing Region
Yaung Ba is from Lahe. He had thrombosis (a disease that blocks the blood flow) that progressed into gangrene. He went to Mandalay in 2016 to get his big toe amputated. A year later and because he couldn’t afford another trip to Mandalay or even Khmati, his whole fore-leg was gangrenous.
When MSF staff arrived in Lahe, Yaung Ba was miserable, hiding under his blanket and delirious because of the pain. MSF supported the young boy to get his operation done in Khamti. The smell of his gangrenous leg was so bad that only a pick-up would take him in the back. He got his operation done on the same day as he left Lahe.
“Five days after I met him in Lahe, I met him again in Khamti. He was the happiest person I’ve ever seen after an amputation” says, Mona Tamannai, MSF doctor. “Three months later, he came back to Lahe and visited us in our office one day. I couldn’t recognise him”.
Yaung Ba
Lahe, Naga self-administrated Zone, Sagaing Region
The old man slipped into a landslide in February and had to be transferred from his small village to Lahe because of a fracture. Unfortunately, the injury was serious and surgery required. Because in Lahe there is no surgeon and the operational theater is not equipped, he had to be transferred to Khamti where he could have received the necessary care.
While Lahe, 2,700 inhabitants, capital of Naga self-administrated zone has the same culture as his own and he therefore has a good chance to find someone speaking his tribal language. Khamti, 34,000 inhabitants, is only 4 hour drive from Lahe but is not part of Naga anymore and is considered by Naga people as a different world. Because of the cultural barrier, he refused to be transferred to Khamti, stayed 3 months in Lahe hospital until he could walk with one’s support and disappeared in the wild.
Insein Clinic, Yangon
“I found out I had HIV in 2000 after I was released from prison.” says U Thein Aung, 56, a former political prisoner who was arrested in 1989 and spent more than 10 years in jail.
“I have had asthma since I was young so I had to get several injections during my time in prison. You can’t hope there will be disposable syringes there. Three of my inmate friends died from HIV after their release. At that time, there was no antiretroviral treatment. There were even billboards everywhere with posters saying ‘No cure for HIV/AIDS’.”
Today U Thein Aung is under treatment. “The nature of my job involves working late and travelling a lot, but antiretroviral treatment must be taken with exact timing so I have to be very careful.”
“In 2016 a blood test revealed I also had hepatitis C. MSF started treating hepatitis C in 2017 so I took a fibroscan test in March this year. The doctor said I have to take pills for three months. Today is the 43rd day. A friend of mine said hepatitis C cost him a lot and he had severe side effects such as dizziness, weakness and anaemia, but I feel completely different from him. I eat well and my skin is getting better; I even feel stronger. More importantly, thanks to MSF, it doesn’t cost me a penny, which I could not have afforded
anyway.”
U Thein Aung, 56
Takheta Clinic, Yangon
“I met my husband 10 years ago in my home town in Ayeyarwady Region. We got married and a year later I found out that he had another wife. I had to move to live with him, his other wife and their children. Later he forced me to sleep with other men in other houses in the neighbourhood which he also owned; then some girls came and went to live in our house. I realised then that he was a pimp and that I had already become a sex worker. Whenever I refused to have sex, I was beaten and left hungry. I always used protection with the clients, and even with my husband, but about five years ago, I found out that I was HIV-positive.
Since then I’ve often tried to run away, but every time, either he found me through the police and other connections, or I had to go back because he threatened my family. Then I tried to send my sister and brother to Yangon and my parents somewhere else. About a year ago, I came to Yangon to live with my sister and brother. I have run away from my husband four or five times already. Hopefully this is the last time.”
Thin Thin, 31 (*Name has been changed)
Muse, Shan State
“You can call me July – it is fine for me because it used to be my name in my former job as a sex worker. I am from Yangon and I was working in a beauty salon there when a friend of mine asked me if I wanted to come and work in another beauty salon in Mandalay. She said it was well paid. My parents had financial issues because both of them were sick so I needed the money. I went there, but I soon found out it was not what I thought. They offered me work as a prostitute. I couldn’t refuse the job because I was making as much money in one night of work as in one month in my previous job, and I had to pay for my parents’ hospital bills. Then it went on and on and, finally, I came here [to Muse] because it is a border town and the business is better.
“Later, I found out I was HIV-positive. I became a regular visitor to this clinic and quit my job to start a small Burmese restaurant. Then I met my boyfriend. He knows all about me and he understands. Although there are ways to prevent him from getting infected, I broke up with him because I didn’t want to put his life at risk. I also want babies, but I don’t want to put them at risk either, so I decided to stay alone. At least I can still support my parents. My future is only for them now. I am trying to live within the reality; there’s no use in mourning my life. It is my karma.”
July, 33
Muse, Shan State
Pyae Pyae is eight years old and one of the youngest HIV patients at Muse clinic. When you live with your 68-year-old grandmother, who has five other grandchildren to take care of, all of them orphans, you have to take a lot of responsibility for your own health, even if you are only a child.
“Both my parents are dead,” says Pyae Pyae. “My mother died from the HIV disease just a while ago. I miss her. Now I live with my grandma, Tin Nyein, and my sisters and brothers and my cousins. I don’t go to school as we collect plastic bottles and then we sell them to get some money. I also have the disease and if I don’t want to die, I need to take my medicine that I get from the doctor. It is important that I take them every day at 8 o’clock but that is okay because I now have my own watch. I never miss my pills. One day I hope I will go to school, and then I want to become a professional football player.”
Pyae Pyae, 8
Muse, Shan State
“I went to Kachin State to find somewhere to live and I met my future wife in a massage parlour where she was working. Meanwhile, I started using heroin. This time was both good and bad for me because I earned lots of cash but I’ve never got along with my wife. We divorced after a year and I came back home to live with my parents. They live in
Mantap, near Mansic, about four hours’ drive from Muse.
I got rashes [herpes] on my thigh a year ago. Then again, a month ago, different kind of rashes appeared on my face and head. I started thinking I had serious problems so I came here. They took my blood and also fluid from the rashes. I am now waiting for the final result but a doctor told me that it is 95 percent sure that I have HIV. I came here with my mother. She’s waiting outside. I don’t think I am ready to tell her about my situation. Well I can’t.”
Soe Aung, 24 (*Name has been changed)
Thaketa Clinic, Yangon
“I was born with HIV. I started taking antiretroviral drugs when I was three years old. My father died of HIV when I was few months old and my mother followed him when I was eight. I live with my grandmother and two aunts. I thought that I couldn’t fall in love, get married and have a family. I tried to commit suicide many times whenever I had fights with my aunts. There was no hope at all in my life.
I suffered from stigma when I was at high school but, after graduating, I started working as a volunteer for Youth Star Network, which has connection with LGBT, HIV-positive people and networks of drug users who work together to fight against discrimination. That was when I discovered that all the prejudices I had experienced were just not right.
I am currently working as an adolescent peer supporter in this clinic. I also started university this year and I met my girlfriend six months ago. Not long ago, I met a guy who had the same problem – he didn’t even know he could have a family. But now he has been able to tell his secret to the girl he loves and are having a baby soon. I am not ready to talk about it with my girlfriend yet, but I believe I will manage one day.”
Nyi Nyi, 21 (*Name has been changed)
Muse, Shan State
“We are very excited about the results, although we are already very sure she does not have HIV,” says Ko Aung Thin, 36, accompanied by his wife Ma Kham Say, 32, as they wait for the test results of their 18-month-old daughter, Mway Huam Om.
The family come from a village called Mann Wain Gyi, near Mann Si, one hour’s drive from Muse. Ko Aung Thin, a farmer, became addicted to drugs and was sentenced to 15 years in prison, but was released in 2011 after serving eight years. “Some years ago, I was coughing for over a month and I lost weight,” says Ko Aung Thin. “I sensed that something was wrong. I came to this clinic on the suggestion of one of my niece’s and found that my feelings were right: I was HIV-positive. A week later, my wife also took the test and was found positive.
“[Our daughter] has been tested for HIV since she was born and the results were always negative,” says Ma Kham Say. “I’ve followed the doctor‘s instructions about how to breastfeed her. She turned 18 months yesterday so today she is being tested for the last time and, if the result is negative, she does not have HIV.”
We are lucky: our families and friends never discriminated against us and now our daughter is the luckiest one. She will never need to take these antiretroviral drugs,” say Ko Aung Thin.
Ko Aung Thin, 36, Ma Kham Say, 32, and Mway Huam Om, 18 months