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.
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.
“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.
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.
“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.
“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 100,00 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.”
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: [email protected]
For more information about World Child Cancer, visit www.worldchildcancer.org