Despite a combined economic crisis and drug shortage, Sri Lanka is poised to open its first children’s palliative care centre – and also hopes to vastly improve the country’s poor survival rates for child cancer.
The centre will offer end-of-life care as well as a place to stay for families who have to travel long distances to the country’s only paediatric oncology ward in the capital, Colombo.
The new centre is called Suwa Arana (place of healing) and is due to open in June amid a national strategy to more than double Sri Lanka’s survival rates for children with cancer to 60%, as part of a World Health Organization global initiative.
The human toll of non-communicable diseases (NCDs) is huge and rising. These illnesses end the lives of approximately 41 million of the 56 million people who die every year – and three quarters of them are in the developing world.
NCDs are simply that; unlike, say, a virus, you can’t catch them. Instead, they are caused by a combination of genetic, physiological, environmental and behavioural factors. The main types are cancers, chronic respiratory illnesses, diabetes and cardiovascular disease – heart attacks and stroke. Approximately 80% are preventable, and all are on the rise, spreading inexorably around the world as ageing populations and lifestyles pushed by economic growth and urbanisation make being unhealthy a global phenomenon.
NCDs, once seen as illnesses of the wealthy, now have a grip on the poor. Disease, disability and death are perfectly designed to create and widen inequality – and being poor makes it less likely you will be diagnosed accurately or treated.
Investment in tackling these common and chronic conditions that kill 71% of us is incredibly low, while the cost to families, economies and communities is staggeringly high.
In low-income countries NCDs – typically slow and debilitating illnesses – are seeing a fraction of the money needed being invested or donated. Attention remains focused on the threats from communicable diseases, yet cancer death rates have long sped past the death toll from malaria, TB and HIV/Aids combined.
'A common condition' is a Guardian series reporting on NCDs in the developing world: their prevalence, the solutions, the causes and consequences, telling the stories of people living with these illnesses.
Tracy McVeigh, editor
Eight-year-old Lochana Lahiru Athauda is one of the children set to benefit from Suwa Arana. He was two when he became one of the 828 Sri Lankan children diagnosed with cancer each year. In the six years since, he has grown used to the 160km (100-mile) return journey from his village in Warakapola, Kegalle district, to Apeksha hospital in Colombo.
“The travel costs are unbearable,” says Lochana’s mother, Enoka Chandani Wijesinghe, who had to quit her job as a computer operator after her son’s diagnosis with acute lymphocytic leukaemia. She tells of the ruinous cost of food and lodging in Colombo: “It’s exhausting and very expensive for a low-income family like ours. In the three years following Lochana’s diagnosis, we spent all our earnings and sometimes borrowed to ensure his treatment was uninterrupted.”
Cancers behave differently in children, and young patients can generally expect better outcomes than adults. However, survival chances are to a large extent determined by where a child lives. While in high-income countries the survival rate for paediatric cancers is 80%, in low- and middle-income countries the rate falls as low as 20%. A lack of data collection means the exact survival rate for Sri Lankan children is not known, but doctors at Apeksha hospital estimate it at 26%.
Unlike some low- and middle-income countries, treatment abandonment is low in Sri Lanka, says Sanjeeva Gunasekera, a paediatric oncologist at Apeksha. “This is due to high literacy levels, family support and a reliable public healthcare system,” he says. “People understand that early detection can result in complete cure and that children have a much higher possibility of survival.”
The centre is being funded by the Indira Cancer Trust, Sri Lanka’s first such charity, founded in 2016 by former MP Karu Jayasuriya. The trust aims to bridge the gap not only between children living in Colombo and those in rural areas, but between Sri Lankan children and their counterparts in wealthy countries.
Suwa Arana is being built close to Apeksha hospital. With 32 ensuite rooms, it will have enough room to house families. “Often, families will travel all together for treatment,” says Joan Hyde, a retired nurse and coordinator of the Suwa Arana project. “They will be able to come here to recover between treatments and receive food and accommodation free of charge.”
Most rooms will only be used for a few days, although some will house children, with their families, during the last months of their lives.
Hyde says a child’s cancer diagnosis will often push the whole family into poverty as parents have to leave work to make the regular long-distance trips to the capital and care for the sick child. Gunasekera adds: “Parents go through severe hardships and make sacrifices to ensure their children receive uninterrupted treatment. The paediatric ward caters to children but there are no facilities for their parents.”
“When Suwa Arana is complete, we will be able to stay free of charge and prepare meals for the child as per instructions. This will be a huge burden off poor people like us,” says Thaksila Madhawi, mother of nine-year-old Raini from Veyangoda, who was diagnosed with kidney cancer in 2018.
Raini’s condition improved after surgery in 2019, and now the family make the 50km journey to Colombo only once every two months. But even so, the visits are increasingly expensive as costs soar in Sri Lanka, where economic turmoil coupled with the pandemic left the country in its worst financial crisis since it regained independence from Britain in 1948.
While the economy is slowly stabilising, inflation remains at 54%. Nearly a third of people suffer food insecurity and two in five households spend at least 75% of their income on food. The World Bank projects that a quarter of the population will remain in poverty for many years.
“We can’t even afford the basics for the child let alone meet her nutrition needs,” says Madhawi, who has been relying on food parcels from the Indira Trust to feed her daughter as she recovers. She values the trust’s livelihood support programme which offered her vocational training and a modest allowance.
Wijesinghe says that Lochana’s meal costs have doubled and the cost of travel to the hospital quadrupled since the pandemic began. She is not sure how she would have afforded her son’s treatment without support.
The financial crisis has also caused a widespread drug deficit. “There is a shortage of medicines for cancer throughout Sri Lanka,” says Indira Trust chair Dr Lanka Jayasuriya Dissanayake. “The governmental mechanism for purchasing medicine is disturbed by the lack of dollars – it is running on donations.”
The trust has been working nationwide with 22 hospitals to secure outside donations for cancer medication. “We procured 500,000 Sri Lankan rupees (£1,140) worth of medicines for one hospital just yesterday,” says Dissanayake. “We get patients walking daily into our office, asking for medicine. Often, we are able to buy the medication for them.”
Even before the crisis, availability of cancer drugs for children was patchy. Between 2019 and 2020, less than half the medication considered essential for treating paediatric cancers was consistently available in Apeksha hospital.
Wijesinghe says she has been forced to buy her son’s medication from a pharmacy at an exorbitant price because the hospital was not able to provide “even simple painkillers”.
While the economic crisis postponed the opening of Suwa Arana, the £1.2m project is going ahead thanks to donors from abroad, including the Sri Lanka Medical Association of North America, Tennessee’s St Jude children’s hospital and technical support from the WHO.
“Now we just need to pay for the lifts and generators,” says Hyde.
The centre will boast a rooftop garden where families can relax, and there will be access to counselling and art therapy. In time, Hyde hopes, they will be able to offer school classes too. “We want it to be a real place of calm and peace,” she says.
