The white spots appeared on Than Win Htut’s right eye just a few months after his first birthday. At first, his mother, Su Su Myint, was not too concerned. “I just thought it was normal,” she recalls.
Within eight months, however, a milky film had covered the entire eye. The doctor near their village in western Myanmar grew increasingly confused and alarmed about Than Win’s condition. By then it was clear the spots were anything but normal.
Today, Than Win, who turned three a week ago, is a regular visitor to the paediatric oncology unit at Yangon Children’s Hospital where he undergoes chemotherapy to treat the tumour growing on his eye.
For the past year he and his mother have taken the arduous overnight journey to the hospital, which is itself battling a shortage of resources, the legacy of decades of rule by a paranoid junta.
His doctors are doing the best they can with what they have. But his prognosis remains uncertain. Were he living in London or Long Island, you could say with confidence that Than Win was going to survive and thrive.
But Than Win is one of the victims of what ought to be one of the world’s most avoidable medical injustices.
This year, 200,000 children in the world will be diagnosed with cancer. In the rich world, this does not have to be a death sentence. Decades of medical research and advances in treatment mean eight in 10 children battling cancer in the developed world will survive. But the vast majority of children diagnosed with cancer these days live in the developing world. For them, the odds are inverted. In some parts of the poor world as few as one in 10 children diagnosed with cancer survive. At the Yangon Children’s Hospital the survival rate is roughly 30 per cent.
The Financial Times today launches its 2013 Seasonal Appeal in support of World Child Cancer, one of the few charities dedicated to fighting cancer in children in the developing world. In the coming weeks, we will profile the work of this young charity, detailing the challenges doctors and families face in fighting childhood cancer and exploring efforts to develop and deploy low-cost treatments.
The biggest killers of children worldwide remain infectious diseases such as pneumonia, diarrhoea, malaria and measles, according to the World Health Organisation. But billions have been poured into tackling those diseases over the past decade, with the Gates Foundation alone spending $2bn fighting malaria.
Non-communicable diseases such as cancer have received far less attention from donors, largely because they were left out of the UN’s Millennium Development Goals, charities say. But cancer is a growing cause of death in the developing world. As people escape poverty and their lifestyles change, the incidence of illnesses such as cancer, diabetes and heart disease grows. So too does the exposure of children. Childhood cancers are now the second-biggest killers of children in the US, after accidents.
As cancer treatments have evolved, survival rates have soared in the rich world. A child diagnosed with leukaemia in the UK today has an 80 per cent chance of being alive five years later, up from just 10 per cent in the 1960s.
“Childhood cancer is always described as a paradigm of treatment success,” says Dr Eva Steliarova-Foucher, who tracks data on children for the WHO’s International Agency for Research on Cancer.
But that “paradigm of treatment success” has not reached the developing world. And that is where the vast majority of cases of – and deaths from – childhood cancers occur.
In 2008, the last time it published its findings, the WHO estimated that more than 93,000 children die of cancer around the world each year. Dr Steliarova-Foucher says 94 per cent of those deaths occur in low- and middle-income countries.
In those countries, the problems confronting children with cancer and those who love and treat them is heart-wrenching. Thousands of children die excruciating deaths each year with little more than paracetamol to dull the pain. Many thousands are never diagnosed because of low awareness of cancers among both the public and ill-trained medical staff.
When children are diagnosed and can receive treatment, they often enter a medical system with few resources, staffed by overworked and undertrained doctors and nurses. In parts of the developing world it is not unusual to discover that there is only one paediatric oncologist in the country, if there is one at all. In Malawi, children with cancer are treated in crumbling hospitals starved of resources next to shiny new donor-funded clinics for treating children with HIV.
“We are seeing more and more children get cancer in parts of the world where they can get treatment for tuberculosis and malaria and other infectious diseases. But randomly, and wrongly, hospitals stop short of offering proper treatment for cancer,” said Allison Ogden-Newton, World Child Cancer’s chief executive.
World Child Cancer operates on the principle that many of the issues surrounding childhood cancer in the developing world are solvable – and that needless deaths can be prevented.
Childhood cancer “is one of those problems that is by no means endless,” Mrs Ogden-Newton says. “We can live in a world in which every child who has cancer can have the right to fight cancer. That is something that can be done.”
WCC was founded in 2007 by the late Geoff Thaxter and colleagues he knew from his time at CLIC Sargent, the UK’s largest children’s cancer charity. His own daughter had died of cancer and, during a visit to Bangladesh, he discovered how little help children with the illness received in developing countries. He was moved to do something about it.
The charity’s main work is focused on “twinning partnerships” that pair leading oncologists and specialist nurses at some of the world’s leading hospitals with peers on the ground.
WCC also helps hospitals find ways to fill the gaps in their treatment and infrastructure. It develops programmes to help parents earn an income and hospitals deliver palliative care to terminal patients in far-flung villages.
In 2008, the year its staff began working with their first project in Malawi, WCC trained just 50 medical professionals. This year it will train more than 1,000 and is on track to reach more than 3,000 children in nine countries. By 2018 it wants to reach 10,000 annually.
For now, the charity operates on a budget of just over £1m and a paid staff of only seven. They spend much of their time co-ordinating a vast network of volunteers and nurturing relationships with leading institutions such as US-based Saint Jude Children’s Hospital, one of the leading paediatric research centres in the world.
But Gordon Morrison, the former businessman who is its chairman and a co-founder, has high aspirations for WCC. He wants it to evolve into an organisation with enough clout to push the UN, WHO and leading health charities to direct more resources to helping children with non-communicable diseases. He also wants to see WCC open branches in 10 other countries outside the UK.
The frustrating thing for Mr Morrison and other experts is that remedies are often readily available – and cheap.
Half of the children with cancer in low- and middle-income countries could be cured with generic drugs and simple treatments that have been around for decades.
Burkitt Lymphoma, a cancer of the lymph nodes that accounts for the bulk of cases found in parts of Africa, can be cured for as little as $60-$100 if caught early, says Dr Tim Eden, a retired paediatric oncologist who is one of WCC’s top advisers. “This is a tumour that is immensely curable,” he says.
That crucial early diagnosis is often hampered in the developing world by inadequate health infrastructure, mismanagement and sometimes corruption. Poor pay drives many doctors to emigrate. And even when decent treatment is available, patients often struggle to reach it.
Than Win began his journey to the hospital with a two-hour ride to the nearest town on the back of a motorcycle. From there, he took an overnight bus ride to Yangon, where he was to begin a five-day course of chemotherapy. The trip to Yangon alone was a strain on the family finances: his father is a labourer who earns 20,000 kyats a day (a little more than $2). Resourceful doctors at Yangon Children’s Hospital helped by rounding up donations and finding cheaper drugs and tests.
Than Win and his 24-year-old mother spent their days in one of the hospital’s paediatric oncology unit’s three main rooms. His bed had no sheets, its metal frame covered in chipped paint. They shared the room with a dozen other children of various ages fighting cancers at various stages. Despite everything, Than Win was “very playful”, Su Su Myint says.
Than Win and his mother slept in the small bed. For food, they depended on the stalls outside the hospital. The parents on the ward often pooled their resources. “It’s like a family,” she says. “We all work together.”
A team from WCC, which is hoping to expand its work into Myanmar, visited Yangon Children’s Hospital a few weeks before Than Win’s stay in October. The group began drafting plans to work with the Yangon unit.
Than Win’s case bears many of the hallmarks seen in childhood cancer cases throughout the developing world. He was diagnosed late and his family could not afford the treatment, which may become even more complicated and costly. His hospital has limited resources: radiation therapy was not an option since there was only one machine in Yangon and the waiting time could stretch to months. The tests in the hospital’s pathology unit also were limited and offered little guidance to the doctors treating him.
The concern was that Than Win’s cancer would spread. For now, according Dr Aye Aye Khaing, of the paediatric oncology unit, it has not. But “even with treatment the tumour is getting bigger”, she says.
Still, through the long days on the ward, Su Su Myint remained hopeful. They had four more days of chemotherapy, then another long journey home. But she sensed that they would be back – the fight for little Than Win’s life has months to go yet. “I just hope he gets better,” she says.