When cancer strikes a child in Myanmar

Published in The Global New Light of Myanmar on 27 November 2015

The indirect costs associated with treating child cancer are a burden too great for some families, particularly those who live in remote areas.
The indirect costs associated with treating child cancer are a burden too great for some families, particularly those who live in remote areas.

Thiri Swe was just two-years-old when she was diagnosed with liver cancer. The discovery was accidental: her parents had brought their baby daughter to a clinic to treat a fever and diarrhoea.

After nine months of chemotherapy and an operation to remove the tumour, Thiri Swe is now cancer free. The tiny survivor of one of mankind’s most devastating diseases giggled as she lifted her polka-dot blouse to display a scar spanning inches across her belly.

“I feel so happy that my daughter is okay. She’s our only child. We were very worried before the operation because she has a rare blood type: we were scared there wouldn’t be enough blood available if she needed a transfusion. We were lucky that only one unit was required,” said her father, U Myo Hlaing.

Although the chemotherapy was provided free of charge by the Ministry of Health, the indirect costs associated with cancer, the treatment of which can last two years and involves lengthy hospital stays, puts a heavy toll on families who are already struggling to make ends meet.

Eight-year-old Htun Htun Min from Bago was diagnosed with leukaemia seven months ago. Both his parents are labourers and had to abandon their livelihoods to travel to Yangon Children’s Hospital. Although they didn’t have to pay for the medication, the travelling costs and loss of earnings dealt a severe blow to the family’s finances. Although Htun Htun Min no longer has leukaemia, his case isn’t straightforward, with infections reoccurring. When a private donor stepped forward to cover the ongoing travel costs, his parents were overwhelmed with relief.

“Our situation would have been impossible without the help of a donor,” his mother Htin Htin Khine told The Global New Light of Myanmar.

A mother holds her five-month-old baby as she waits for test results.
A mother holds her five-month-old baby as she waits for test results.

Regular donors also turn up to the hospital at 7am and unload hot food for patients and their families in the car park. Some cover the costs of funerals. Any money donated to the hospital is given directly to the families.

Myanmar has just two paediatric oncology units: one is at Yangon Children’s Hospital and the second  is at Mandalay Children’s Hospital. Dr Aye Aye Khaing established the first paediatric oncology unit in Myanmar in 2002. She is the head oncologist for the unit and the only one there: her work is supported by junior doctors and nurses, who are themselves too few in number.

Kyaw Min, 12, is from western Rakhine State and has refractory cancer, which means that it is resistant to treatment. He is completely bald and his wispy eyebrows border lifeless eyes.

“We are not winning,” said Dr Aye Aye Khaing quietly.

Kyaw Min’s parents are farmers and getting to Yangon involves travelling by boat and bus: it’s a journey that takes 36 hours. It is difficult to imagine how the gravely ill 12-year-old has the stamina to cope with repeated trips to Yangon. His current visit will last a week and he and his mother will sleep on the second floor of the hospital, which is crowded with other patients and their families.

Due to a lack of human resources, counselling for parents is unavailable.
Due to a lack of human resources, counselling for parents is unavailable.

“We don’t have proper accommodation for patients and their families. In the Philippines, there is House of Hope and in the US, Ronald McDonald House. I wish Myanmar had something like that,” said Dr Aye Aye Khaing.

In Myanmar, a child’s prospects of survival are determined by their family’s socioeconomic status. The parents of a 13-year-old boy with a very rare form of cancer were able to pay for him to travel overseas for an investigation, which led to identifying the correct medication to administer to him when he returned to Myanmar, said Dr Aye Aye Khaing.

These children are among dozens of others sitting in a waiting room at the paediatric oncology ward – including a woman cradling a five-month-old baby who has had cancer three times and is awaiting blood test results. Whilst the walls are decorated with colourful murals and there’s a scattering of toys to play with, the children sit listlessly beside their parents. One boy sits atop a plastic slide with his head in his hands.

A sombre waiting room at Yangon Children's Hospital.
A sombre waiting room at Yangon Children’s Hospital.

Around a hundred patients assemble at the ward every day. An average of 60 remain overnight as inpatients. The hospital is chronically short of manpower, but the situation has been improving since World Child Cancer set up a partnership with Yangon Children’s Hospital and Boston Children’s Hospital.

World Child Cancer is a charity that was established in 2007 and its activities in Myanmar are funded by the UK’s Department for International Development (DFID). World Child Cancer funds partnerships between hospitals in different parts of the world, with the aim of improving access to treatment and care for children with cancer and their families.

World Child Cancer estimates that between 1,600 and 3,000 children are diagnosed with cancer every year in Myanmar. One of the challenges is that diagnosis is often fatally late and only a fraction of cases are thought to be diagnosed.

Survival rates for childhood cancer in Myanmar are far lower than those in developed countries.
Survival rates for childhood cancer in Myanmar are far lower than those in developed countries.

“The typical scenario for a patient in Myanmar is that the cancer is in the advanced stages: tumours are larger and more disseminated. The condition in which they arrive makes treatment more complicated. And many children are malnourished or have competing illnesses such as TB, HIV or parasitic diseases. And they are more vulnerable to infections if there is a lack of access to clean water,” said Carlos Rodriguez-Galindo, a consultant paediatric oncologist who works with World Child Cancer.

The most common form of childhood cancer is leukaemia – it accounts for around half of all patients. Cure rates in the US and Europe are 90 percent, but due to limited supportive care in Myanmar, such as physiotherapy, nursing care, laboratory support and nutrition, a patient’s chances of survival are fifty-fifty at best. Many children die from side effects, such as having a very low white blood cell count, which makes them prone to infections. Laboratory facilities are ill-equipped to identify various infections, which prevents doctors being able to select the correct antibiotics. A further problem is that the hospital cannot treat patients receiving high doses of chemotherapy, so doses are lower and therefore less effective, said Dr Sophie Dewar, a highly specialised clinical psychologist who works for World Child Cancer.

“The early symptoms of leukaemia usually include fever, fatigue, paleness and feeling weak. It’s sometimes mistaken for a virus because the symptoms are quite vague,” said Lisa Morrissey, nurse manager at Boston Children’s Hospital during a visit to Myanmar.

A father waits in a staircase with his son in the paediatric oncology unit.
A father waits in a staircase with his son in the paediatric oncology unit.

“Another big problem is that leukaemia treatment can last more than two years. A lot of families live far away. The costs of having to travel between their home and the hospital, which during the rainy season can become very difficult, and to sustain that over a long period, leads many families to abandon treatment. And sometimes parents are faced with choosing between caring for a sick child and being able to provide food for their other children,” she added.

Dr Aye Aye Khaing estimates that as many as 60 percent of patients discontinue treatment. Although doggedly pragmatic, she agreed that has one of the most emotionally challenging jobs in the world.

“It’s very tough. Paediatricians can generally see a bright outcome, such as a baby being born and discharged – the parents are so happy. Here, things are mostly very grave. I try to get parents to focus on the present. I’ll say, ‘Today your child is sleeping and eating and isn’t in pain. Be happy for today.’ But sometimes I know from the prognosis that a child isn’t going to make it. Some of the nurses and doctors cannot cope,” she said.

She said that one blessing is that child cancer is rare. Prevalence rates around the world differ little. According to the World Health Organisation, 1,500 children out of 100,000 under the age of 15 contract cancer, whereas the ratio for adults is 470. An estimated 90,000 children under the age of 15 die of cancer every year. Lifestyle factors are not considered to play a role in up to 90 percent of cases, as children are unlikely to be exposed to common risk factors. Scientists are yet to discover why some children contract cancer and others don’t.

In September, World Child Cancer and Yangon Children’s Hospital received support from the Citymart Love & Hope Foundation and have been working in partnership to improve care for children with cancer in Myanmar.

“Our new partnership with the Citymart Love and Hope Foundation is a welcome development. With this additional funding, Yangon Children’s Hospital can now provide better nutrition to improve the overall health of the children during treatment, provide transport to help children and their families get to the care they need, and provide local community care to extend the reach of the hospital,” said World Child Cancer UK CEO Jon Rosser.

“I’m confident that our focus on mentoring, education, facilitating partnerships, improving access to medicines and data collection practices has made a difference to the chances of Myanmar children beating cancer and having a future.”

For decades, Myanmar’s health system has been heavily centralised and chronically underfunded. However if the pledges contained in the National League of Democracy’s election manifesto are fulfilled, there is hope on the horizon. The NLD has committed to “enable government hospitals and clinics to provide high-quality drugs and modern treatment methods [and] raise the qualifications of government health staff.”

Yangon's Children's Hospital and Mandalay Children's Hospital are the only two places in Myanmar where children can receive cancer treatment.
Yangon’s Children’s Hospital and Mandalay Children’s Hospital are the only two places in Myanmar where children can receive cancer treatment.

It will also “increase the national health budget, and enable a reduction in the level of out-of pocket expenditure incurred by the public for medical treatment [and] will cooperate with international experts and organisations.”

Ensuring that children with cancer in Myanmar have the best possible chance of survival will lessen the suffering that many families are currently enduring.

To donate to the children’s cancer ward at Yangon Children’s Hospital, email Dr Aye Aye Khaing: ayeayekhaing.dr@gmail.com

For more information about World Child Cancer, visit http://www.worldchildcancer.org

From ambassador to author

Published in The Global New Light of Myanmar on 7 October 2015


Mr Rajib Bhatia served as India’s ambassador to Myanmar from 2002 to 2005

Mr Rajib Bhatia’s career as a top level diplomat spanned more than three decades and nine different countries, including Myanmar, where he served as India’s ambassador between 2002 and 2005. Since retiring from the Indian Foreign Service in 2009, Mr Bhatia has written more than 150 articles on foreign affairs. On Monday his new book, India-Myanmar Relations: Changing Contours, was released in Yangon. He talks to The Global New Light of Myanmar about what his research unearthed and some of his career highlights – such as taking Senior General Than Shwe to the Taj Mahal.

Your book covers a topic of vast proportions – how did you go about it and how would you describe the finished product?

Indeed, I’ve covered the whole period of India and Myanmar’s relations, from ancient times to the present. It took me four years to research, with my research beginning in 2011 when Myanmar’s reform period began. And I did of course draw on my four years of experiences as an ambassador.
One aspect of my book that I’m very candid about talking about is one of the most talked-about dimensions of the relationship: China. I devoted a separate chapter to what I call the ‘India-China-Myanmar triangle.’ The other feature is that my book presents an Indian perspective on Myanmar polity, society, culture, foreign policy and economy. Although my book’s title is India-Myanmar: Changing Contours, it’s about much more than that: it’s about the surrounding region as well. I can also say that while I have tried to be objective, I did have an agenda. That agenda was to try to contribute to strengthening of relations between India and Myanmar.

As India already has so many trade partners, is the benefit you refer to Myanmar’s alone?

No, it’s a shared interest. First of all we are immediate neighbours. We’ve become close through history and we also share common challenges: both Myanmar and India want this region to be one of peace and harmony. Neither wants a single country to dominate the region. Both want to see a strong ASEAN. When I say ‘strengthen,’ it means a shared interest between India and Myanmar, and also for the region’s interests.

The Victoria Memorial in Kolkata, which was the capital of the British Indian empire - including Burma - until 1911. Photo - Jessica Mudditt
The Victoria Memorial in Kolkata, which was the capital of the British Indian empire – including Burma – until 1911. Photo – Jessica Mudditt

How would you describe the dynamics between India, Myanmar and China?

China has a legitimate reason to have good relations with Myanmar – after all they share borders and history. And similarly, the fact that India wants to have good relations with Myanmar also makes sense. One of my central questions was to find out what Myanmar wants, because it’s a country in the middle of two big giants and it’s being wooed by both. My own reading is that Myanmar does not want to choose one country over the other. Myanmar wants to have a cooperative relationship with both. It does not want either country to compete, much less confront one another over it. If we understand that, it becomes clear that all three countries should work for the harmonisation of interests in such a fashion that the stability and progress of Myanmar is assured.

One of my central questions was to find out what Myanmar wants, because it’s a country in the middle of two big giants and it’s being wooed by both.

Would you agree that in comparison with China, India has been less actively engaged with Myanmar?

I must first say that China’s economy is about five times bigger than India’s. So if you were to just calculate the dollars and cents, then the answer is yes – China’s economic stakes are much bigger in Myanmar. But if you take a larger and deeper view, the bond between India and Myanmar is very, very close. Buddhism came from India, which defines Myanmar. There are cultural influences that came from India that remain today. During the British Raj, for five or six decades, Myanmar was ruled as part of British India. These are historical facts that cannot be denied. And in recent years, India has put in very substantial sums of money in various cooperation programmes – somewhere in the range of 1.5 to 2 billion dollars. That is not a small sum of money. So while China may have much bigger stakes, India’s are not small. I also believe that India is willing to do more, and that if Myanmar were to look a little bit more towards India, it will find India looking back towards it.

You mentioned that your book is written from an Indian perspective – please could you elaborate on that?

There are two things I’d like to mention in terms of the ‘Indian perspective.’ The first is that I have used a lot of Indian sources and views of Indian scholars to illustrate my points. I feel that – with due respect – if Australian, French and Norwegian scholars etcetera can hold forth on Myanmar – well, we are next door and would like to do so also. My idea was to put across Indian voices and views onto the international stage, which I believe I will succeed in doing because my book is published by Routledge, Taylor & Francis Group.

The second thing is that there is vast knowledge in India about Myanmar – it’s scattered, but it’s definitely there. From the northeast we have Myanmar next door, as we do from West Bengal and from the Bay of Bengal. So the knowledge is there and what I wam arguing is that we must recreate the sense of proximity between Myanmar and India.

Mr Rajiv Bhatia with Mr Shri Gautam Mukhopadhaya, India's 21st Ambassador to Myanmar at India House in Yangon.
Mr Rajiv Bhatia with Mr Shri Gautam Mukhopadhaya, India’s 21st Ambassador to Myanmar at India House in Yangon.

What was it like being an ambassador in Myanmar, back when it was truly a different place than it is today?

I had a very rich and varied experience. Of the nine countries I served around the world, which included Africa, Central America, North America and other parts of Asia, it was Myanmar that had the deepest impact on me. It’s very close to my heart.

The high point of my career in Myanmar was accompanying Senior General Than Shwe, who was then the head of state, to India on a four-day state visit. I acted as his personal guide to some of India’s highlights and we had an excellent relationship. I took he and his wife to the Taj Majal, as well as to Kolkta, Bangalore and Delhi. He was mesmorised by India’s diversity.

What do you think Myanmar can learn from India in terms of celebrating diversity?

India certainly learned the hard way since the time it was partitioned with Pakistan, that religion and politics have to be separated. Religion is between an individual and their god but politics is about the peoples’ wishes. So the two must be separated.

While Myanmar and India are close, how does your book address the waves of anti-Indian sentiment that have arisen from time to time?

History is history: it cannot be changed. It is a fact that large numbers of Indians left when World War II began, when U Nu made legal changes and when Ne Win was in power. All those periods are there. But we should learn from history. Indian people are not against Myanmar – they are very friendly towards them. And those of Indian origin living in Myanmar have contributed in important ways to the country. I would strongly recommend, as I argue in the book, that two things are very important. The first is to expand economic cooperation and the second is to develop a close and more diversified relationship between the people of India and Myanmar.

In a practical sense, how can this be achieved?

One idea I have is to set up an India-Myanmar cultural foundation, which could be funded through the business communities and governments of both countries. The funds could be placed at the disposal of the ambassadors in Yangon ad Delhi. This would free up the ambassadors from bureaucratic interference and would allow them to truly contribute to small programmes bringing in tourists, media, university students and so forth. Bringing these types of people together more often could prove enormously beneficial.

In the last chapter of my book, I also suggest that a strategic partnership should be set up to hold annual meetings and such things. It’s among a specific list of recommendations I make in the final chapter of my book.

India-Myanmar Relations: Changing Contours is published by Routledge, Taylor & Francis Group and the Institute of Southeast Asian Studies, Singapore.


Taking a peep at Mt Popa

Published in Mizzima Weekly on 27 August 2015

Nats in temple complex at the summit of Mt Popa
Nats in temple complex at the summit of Mt Popa

For those intrigued by the practice of nat worship in Myanmar, a trip to Mt Popa is a must as it’s the most revered place in the country for this fascinating, millennium-old form of spirit worship.

Mt Popa’s name is derived from the Sanskrit word for flower and this rocky crag contains a complex of monasteries, shrines and pagodas at its summit. It’s mind boggling to contemplate how they got there (divine intervention perhaps?!). Mt Popa is located just 50 kilometres southeast of Bagan, which means it’s possible to explore it by taking just a half a day out of the more touristy temple hopping activities on offer there. Booking a minivan or shared taxi is a cinch from Bagan’s tourist town of Nyaung Oo and costs around K45,000 per person, however it’s worth investing a little more to hire an English speaking guide because the area is rich in stories of legend, history and mysticism. It is said, for example, that a person who gathers an army at the slopes of the mountain is guaranteed of victory. I doubt the claim has been tested for some years though…

Worshipping nats (‘spirits’) predates Buddhism in Myanmar: the institution of the official 37 nats was made (albeit later amended) by King Anawrahta of Bagan, who also founded the first Burmese empire during his rule from 1044–1077. When Buddhism arrived, the nat worship system was merged without so much as a hiccup – although it cannot be said that all Buddhists subscribe to the practice of nat worship in contemporary times. It does, however, remain immensely popular in rural areas.

Not one, but two Mt Popas

Mt Popa - how is it even possible?!
Mt Popa – how is it even possible?!

The term Mt Popa can be a little confusing due to it being duplicated. Mt Popa is now the official name of the famous Popa Taung Kalat, which is a 740 metre volcanic plug with 777 steps leading up to its gilded Buddhist temple complex. The 1500 metre volcano that was previously known as Mt Popa has been renamed Taung Ma-gyi (‘Mother Mountain’) and is nowadays home to the luxurious Popa Mountain Resort and Popa Mountain Park, which offers excellent hiking environs. There’s a bit of debate as to when the volcano last erupted: some say it was 250,000 years ago while others contend it was 40 million. Either way, both estimates are distant enough to be sure the volcano is well and truly (and safely) extinct.

A sesame-grinding oxen
A sesame-grinding oxen

Do make sure that your driver understands which of the Mt Popas you wish to visit – the assumption would likely be that it’s the temple complex you’re seeking. En route you’re very likely to stop by a toddy ‘brewery’ because the region is well known for producing palm wine (in fact I believe everyone stops at the same road-side place, which also features an interactive mill where oxen slowly turn sesame seeds into oil). Toddy is made from the fermented sap of certain types of palm trees – including coconut palms – the same trees also produce the non-alcoholic jiggery, a type of candy loved across the region. Both are available to buy at the little shop, but do watch your toddy intake: drink enough in the morning at you’ll be out of it by lunch…

Play by the rules

A word of caution: according to local superstitions, visitors should avoid wearing red, black or green while visiting the area (so forget your favourite football jersey). Swearing or saying nasty things about others is also ill-advised (as it should be in general!), as is packing meat-based snacks. Pork is a definite no-no. There’s a bunch of restaurants serving up hot meals and refreshing drinks along the base of the temple steps, so there’s no real need to bring anything other than possibly a bit of trail mix. Those who breach the aforementioned rules risk offending one of the 37 extremely powerful nats, who may retaliate by inflicting dramatic ill fortune. Nats aren’t to be messed with: they have a reputation for being far less forgiving than the Lord Buddha. Whether this is because almost all of them met a violent death during their lives as humans is an un-established but plausible reason. A violent death in Myanmar is known as ‘sein’ – a ‘green’ death, whereby green means ‘raw’. ‘Nat sein’ is another term for nats. There’s a book called The Land of Green Ghosts by Pascal Khoo Thwe that makes for wonderful pre-departure reading. The memoir begins by describing the author’s childhood in a remote Burmese village, where nat worship is part and parcel of his mystically infused upbringing.

Drunk Nat and Flower Eating Ogress

Drunk Nat
Drunk Nat

The most popular Kyawswa in Myanmar spirit history is Lord Kyawswa (‘Drunk Nat’), who was himself born at Mt Popa. He is famously claimed to have said, “If you don’t like me, avoid me. I admit I’m a drunkard.” He’s the guardian of gamblers and drunks and sits on a horse decked in rum and whiskey bottles. Pilgrims leave unopened bottles of whiskey, beer and rum as an offering – not just to Drunk Nat but to a variety of the male nats. Lit cigarettes are also placed on their mannequin-like hands. When the ash of a cigarette remains unbroken to the filter, a blessing is considered to have been bestowed on the donor. Meanwhile, female spirits are sprayed with perfumes and decorated with scarves by devotees.

Before embarking on your journey up the 777 steps, it’s worth paying a visit to the tiger-statue shrine in the village at the foot of the mountain. The display inside begins from a dark inner hallway containing mannequin-like figures representing some of the nats, as well as Hindu deities. This shrine contains nats excluded from the principal group of 37, including the Flower-Eating Ogress and her two sons, Min Gyi and Min Lay. There’s also the Pyu goddess Shin Nemi (Little Lady) who is a guardian of children and receives a bounty of toys during Myanmar’s exam season. Locals pray to Shwe Na Be (Lady with Golden Sides) when a snake enters their house. Unsurprisingly, you’ll note that she’s the one grimly holding a serpent.

Monkey mayhem

A mischievous baby monkey
A mischievous baby monkey

An abundant population of Macaque monkeys also call Mt Popa home. They’re completely brazen and some are so well fed that some are the size of a small child. Keep your belongings safely tucked away in a bag as you climb the steps – despite being fed loads of bananas which hawkers sell to tourists and pilgrims, they won’t hesitate to rob you of the water bottle you’re clutching. I saw this happen to a lady walking a few steps ahead of us – and I heard several others let out squeals of terror during a close shave. A number of Myanmar workers have been tasked with the unfortunate job of clearing the steps of the prolific monkey poop and will approach you for a donation; sometimes a little aggressively. It’s your call either way. And be on the lookout for hermit monks known as yetis: they’re dressed in brown robes and sport conically peaked hats.

Once at the temple there are breathtaking views of the Myingyan Plain. The summit is a rocky crag crowned with a complex of monasteries, stupas and shrines. It shouldn’t take more than 20-30 minutes to reach the top – but it’s worth stopping along the way to take in the views. Those who visit on the full moon month of Natdaw (which occurs in December) are in for a treat – not only is the weather discernibly cooler but it’s when the annual festival takes place at Mt Popa, which is a riot of colour and costumes. During either May or June, there’s an arguably larger festival during the full moon of Nayon.


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