As part of a nationwide strategy to transfer HIV patients to Myanmar’s National AIDS Programme (NAP), Médecins Sans Frontières (MSF) closed our HIV clinic in Insein, Yangon in late June.
The Insein clinic, which opened in 2014, was part of our larger Yangon project, which has been running since 2003. At its height, the project provided treatment to more than 17,000 people, many from outside Yangon. The closure represents a milestone both for MSF and for Myanmar, marking the country’s growing capacity to provide antiretroviral (ARV) treatment for people living with HIV.
MSF was the first provider of ARV treatment in Myanmar and for some time ran the largest HIV treatment programme in the country. In recent years, as the capacity of the NAP and National Tuberculosis Programme (NTP) has grown, we have transferred patients to the care of the Ministry of Health and Sports for treatment in clinics closer to their homes.
The last few days
Approaches to patient care in Insein
"Having spent time in this job has made me appreciate just how effective our counselling programme is."
Ko Myo Kyaw had been a counsellor and educator at the Insein Clinic. Over some 15 years, he has accumulated significant experience in counselling people living with HIV. One of his priorities in counselling patients is making sure they adhere to their treatment, and his approach comprises patient motivation, social issues and behaviour. He explains what it was like to counsel people living with HIV in Myanmar during his work at Insein.
"There are various social and psychological factors that affect the treatment of HIV, and discrimination against people living with HIV in Myanmar is still prevalent. If a person has tuberculosis (TB), they can say so with confidence. But the same simply isn’t true with HIV – the stigma continues to be widespread and this can affect people’s adherence to their treatment."
Overcoming stigma and social challenges on HIV treatment
"People living with HIV need to take their antiretroviral medication every day; they might do this at home or at work or even at school. Due to a sense of shame or embarrassment, some patients choose to hide from others when they take their medication – this can result in irregular timings and affect their treatment."
"There are also other situations that make adherence to treatment difficult, for example, if a patient quarrels with their spouse, they might forget their medication or lose their motivation to continue with the treatment."
“It’s important to reduce these kinds of risks to treatment and to accomplish this, we have to understand our patients and the challenges that they face, so that we can help where possible. Counselling is essentially about being there to support our patients in their successful treatment."
Three factors and three techniques in patient adherence
"I’ve been a counsellor and educator here for about 15 years, and in my experience, there are three main factors in working to promote a patient’s adherence to HIV treatment: motivation, social challenges and behaviour."
"In addressing these factors, we have three main techniques, the first is a ‘motivational interview’. This is a discussion, which helps us establish how to provide counselling for someone who may have lost their motivation to continue with treatment."
"Secondly we look at ‘problem solving’ – of course everyone faces day-to-day social challenges, but our goal is to see which social problems we can help alleviate so that the person can continue with their treatment and stay healthy."
“Sometimes we also adopt ‘behaviour change counselling’. We do this when someone displays harmful tendencies, such as binge drinking, drug use or unsafe sex – our objective in this is to help them adopt behaviour that benefits, rather than hinders, their treatment."
“I told myself that I would die when my time came, and until then I would pass every day meaningfully.”
Ma Win Win* lost her husband and baby son to AIDS. She endured homelessness and poverty and survived. Now she works as a peer supporter, providing health education and counselling for others, she uses her own story as an example for others, encouraging them to never give up.
"I work as a peer supporter now, providing counselling and health education for others living with HIV. Before I had this job, and before I had antiretroviral treatment (ART), my life was miserable.
My husband died in 2000 at the age of 28 – I was pregnant when he died. Our son was also born with HIV, and when he became sick, I took him to hospital. I tried to make a little money by drawing and selling pictures while my boy was being treated in the nutrition ward. He was suffering from tuberculosis and he was so thin. I had no other family members to look after me. When my son finally died, he was just four. We couldn’t get access to ART at the time. After the deaths of my husband and son, I was alone, without an income, and I had nowhere to live.
Because I had HIV, my relatives didn’t want anything to do with me; they wouldn’t even let me drink water from their homes. My parents had been dead for a long time. I have siblings but they live with their own families now, and when they found out that I had HIV, they wouldn’t let me come to their houses. Finally, a friend’s family let me live in a small hut behind theirs, in Thaketa Township (Yangon) on the other side of Pazuntaung Creek. I didn’t have any money to buy food, so during the day I would to a Pagoda called Taya-shi-Taung, about 45 minutes’ walk away. I would stay there all day, collecting mangos that had fallen from the trees, and drinking water from the public water pot in the pagoda compound. Sometimes I took food that had been given as an offering to Buddha, and sometimes I had to beg for food. I would queue up with the other destitute people begging for leftover food from the monastery. Some days I didn’t find any food at all. I still feel the pain whenever I think about it.
My health was deteriorating day by day. My CD4 count dropped to just 14 (CD4 cells are the cells that the HIV virus kills – the number declines as the HIV infection progresses). I went to MSF’s clinic in Hlaingthayar township (Yangon) in search of treatment. They had given me accommodation before, when my son was being treated. But when I came back for treatment, I couldn’t get it at first – they were unable to treat everyone as there were a lot more people who needed ART than MSF could provide care for. I thought that I was going to die. The only medicine I could get was Septrin. By that point I was visibly deteriorating – there were ulcers all over my body. Sometimes I would do laundry for other families, to try and earn a little cash, but they stopped hiring me because of my appearance. I expected to die. I even thought about drowning myself in the creek.
There were a few administrative challenges before I could get the treatment I needed from MSF – I wasn’t registered in any township at that time. Out of despair, I was ordained as a nun at a local monastery called Shwegu Yeiktha. I was almost on my death bed by that point. In the end it was one MSF doctor who encouraged me to pick up my medical records, and come for treatment at MSF’s clinic in Thaketa township. I was too weak to pick up my own files by then, so I asked someone to do it for me.
MSF treated me for TB first. I coughed a lot, suffered from fevers at night, felt exhausted, and had ulcers all over my body. The same doctor who first encouraged me began giving me TB drugs. They examined my lungs, and paid for my transport costs to and from the clinic. So I began receiving TB treatment while living in that little bamboo hut in Thaketa. I took TB drugs for nine months. After that, I began with my ART.
I was also suffering from a heart condition and asthma during my TB treatment, and I was admitted to Weibagi hospital (part of Myanmar’s Ministry of Health) in North Okkalapa township, Yangon. It was during the Thingyan festival (the annual water festival in Myanmar, which heralds in the new year). I was admitted to the HIV ward because they knew I was HIV positive. Later, a friend came to nurse me, but at first there was no-one. At the hospital, I saw one patient after another die. Once again, I began to anticipate my own death.
The hospital fed me while MSF provided me with money to buy the medicine I needed. I didn’t want to die. My TB treatment was taking effect by that point and I started getting stronger. I began helping other patients wash their clothes to try and earn some extra money. I wanted to earn money – I knew I wanted to live. Sometimes I would see dead bodies being carried out on trolleys. When would be my turn, I wondered. When the doctors made rounds, they told me to pray to Buddha. They gave me an inhaler, as well as injections to help dissolve the mucous in my lungs. The money I earned money from washing clothes was spent on nutritious food like bananas. After Thingyan, I had to go home – it was too awful to see dead bodies every day.
They let me discharge myself from hospital, and when I got back home to that creek-side hut, I practised meditation. I tried to forget about my disease. I told myself that I would die when my time came, and until then I would pass every day meaningfully.
When I began my ART treatment with MSF, my CD4 count improved. I took ART at regular intervals. The doctors were so good to me. They were always there to support me.
By 2006, my health had improved and I joined group discussions for people living with HIV. Every Sunday, I participated in the HIV patients’ group discussions (led by a group called Phoenix). Later I began working for PSI. Now I go to locations where sex workers operate, like KTV (karaoke TV) salons, massage parlours, brothels, and night clubs and I give talks on HIV/AIDS prevention and treatment. I ask people to get tested, and if necessary to go for treatment. I want to give people the best chance. I encourage them not to get depressed about HIV, offering my story as an example of what’s possible.
After my health had improved significantly, I found another place to live, in Hlaingthayar township. Now I take ART regularly, and I’m like a normal person. I’ll keep working for as long as I am alive.
Now I don’t need to worry about shelter, food or clothes, and I can live a normal life. Now that I have my health, I can stand on my own two feet."
* Name has been changed
MSF has been piloting programmes since 2003
"Having spent time in this job has made me appreciate just how effective our counselling programme is. Before 2004, I didn’t know much about NGOs like MSF. I first learned about the counselling position through my neighbour, she was working here as a nurse, and when I asked her what a counsellor does, she explained that a counsellor needs to interact with patients," says Ko Myo Kyaw.
"When MSF began ARV treatment programmes here in 2003, a lot of lives were saved. If they hadn’t done that, many more people would have died. I’m proud that I can be a part of MSF and contribute."
"Another reason I’m happy to work with MSF is the hepatitis C treatment that began in 2016. That programme began as a pilot in Yangon, led by the Insein clinic, and today we have patients who are completely cured of hepatitis C. I’m proud when I think of this, and my work as a counsellor makes me proud too."
"Now there are other NGOs that are starting HIV programmes, and when they need counselling training, they invite MSF to share our experience. It makes me happy that I can share the knowledge and skills that I learned from my teachers and from my own experience."