International Childhood Cancer Day on Saturday
Playing with colours while drawing pictures is the only thing that brings joy to seven-year-old Afia Akhter these days.
The second-grader, who is suffering from blood cancer, largely spends her days lying in bed at a shelter home for child cancer patients in Dhaka nowadays.
Diagnosed with acute lymphoblastic leukaemia in September last year, she has been living in the shelter home for the last six months.
“Her hair and eyelashes are falling out day by day, but she never stops drawing – these colour pencils and her smile give me hope to fight against her cancer,” Afia’s mother Aysha Akhter Lovely said.
Afia, along with 19 other children diagnosed with cancer, is now undergoing treatment at Ashic Foundation, a 20-bed facility in Dhaka for cancer-affected children from rural areas.
Like Afia, a significant number of children are suffering from cancer in Bangladesh. Unlike her, though, most of these child patients cannot afford the treatment, which is quite expensive in the country.
According to the World Health Organization (WHO), around 150,000 new patients are diagnosed with cancer in Bangladesh every year, of whom 20% are children.
Among these children, 90% are diagnosed at the late stages, according to the findings by WHO.
It is in such circumstances that International Childhood Cancer Day will be observed in Bangladesh as also in 90 other countries.
Dr Mafizur Rahman, associate professor in the department of radiation oncology at the National Institute of Cancer Research and Hospital (NICRH), said a lack of awareness about the disease was a major reason behind late diagnosis.
“If cancer can be diagnosed at an early stage, children can survive. But due to mostly their parents’ lack of awareness, most children come for diagnosis at the late stages, when chances of survival have already become slim,” he told Dhaka Tribune.
However, the survival rate of childhood cancer patients is higher compared to what it was 20 years ago, he added.
Second-hand smoking, pesticides and colour in food are major reasons behind cancer among children.
Another reason is parents administering medicine to their children for allergies or fever without consulting a doctor, said Dr Mafizur Rahman.
“Heavy use of medicines like paracetamol and Phenergan are also risky,” he further added.
Expensive, inadequate treatment facilities
Salma Choudhury, founder and chairperson of A Shelter for Helpless Ill Children (Ashic) Foundation, pointed out that not only was cancer treatment highly expensive in Bangladesh, but there was also a lack of proper treatment facilities.
“The minimum cost for treatment ranges between Tk5 lakh and Tk20 lakh, which most of the families of patients cannot afford,” she told Dhaka Tribune.
In addition, palliative care facilities are available at only eight government hospitals at present.
Palliative care for children is the active total care of a child patient's body, mind and spirit, and also involves giving support to the family, according to WHO.
According to World Child Cancer, an international organization working to facilitate cancer treatment for children across the world, two million children in Bangladesh are in need of palliative care, with 29,000 needing specialized end-of-life care. However, less than 1% of the children requiring palliative care in Bangladesh have access to it.
The lack of access to palliative care means children are suffering needlessly and dying in pain, the organization says.
Those who can afford it, take their children to neighbouring India for diagnosis and treatment as there is a general lack of faith in local diagnostic reports, said Salma Choudhury.
Absence of skilled human resources in laboratories, lack of oncologists and paediatric oncologists at hospitals, and lack of palliative care facilities are key hindrances behind childhood cancer treatments, said Prof Syed Md Akram Hussain, founder chairman of the department of oncology at Bangabandhu Sheikh Mujib Medical University (BSMMU).
There is another challenge, too.
“Cancer patients need long-term treatment, but 38% of the families [in Bangladesh] refuse to continue treatment once patients go into remission. This increases the risks for patients to get fully cured,” Dr Mafizur Rahman told Dhaka Tribune.
Pointing out that early detection of cancer was the key to improving the situation, Dr Akram Hussain urged people to go for basic medical check-ups every year.
Ashic: A beacon of hope
Salma Choudhury founded Ashic Foundation in 1994, after suffering a grave personal loss.
Her son Ashiq Husain Choudhury died in May 1993 after a long battle with cancer.
“Many parents like me lost their children because of cancer, as many are unaware that children can be infected with cancer too,” she told Dhaka Tribune.
Salma Choudhury founded the cancer shelter with the goal of improving the survival rate of cancer-affected children in Bangladesh as well as improving the overall quality of life of the terminally ill children while supporting the children’s families.
Considering how expensive cancer treatment is, which leads to discontinuation of treatment for many, Ashic Foundation offers treatment to children diagnosed with cancer at a daily cost of Tk100. But this offer is only available for patients coming from outside Dhaka.
Ashic currently runs eight programs for child cancer patients: patient services, counselling programs, a play centre, outing program, shelter for family members, financial support for treatment, a palliative care unit, and a wish list program.
Since 2000, a total of 811 terminally ill patients have been sheltered at the foundation, while several thousands of patients received other forms of assistance.
Choudhury had plans of establishing a cancer hospital for children, but they had to be scrapped when she discovered that there were only 14 paediatric oncologists in Bangladesh, which was not sufficient to set up a specialized cancer hospital.
However, to ensure low-cost treatment for patients, Ashic launched a palliative care clinic at Road 3/A in Dhanmondi, Dhaka.
Patients can receive palliative care facilities at Tk3,000-7,000 per day, depending on their conditions.